The Patient and Family Financial Resource Guide
WHEN YOU ARE IN THE FIGHT OF YOUR LIFE,
INFORMATION CAN BE YOUR STRONGEST ALLY
At no time does the concept of “Living In The Moment” resonate with more urgency or meaning than when a family is confronted by the life-threatening illness of a loved one. Almost immediately, many families find themselves coming to an unforeseen crossroads where physical, emotional, spiritual and financial issues suddenly intersect. For most who find themselves at this critical juncture, it is a daunting psychological challenge, to say the least. But for many families, it can also feel completely overwhelming for one very basic reason – the challenge of sitting down together to review the immediate and long-term financial consequences of this life-altering situation.
At Fifth Season Financial Corp, we understand firsthand that needs do not begin and end with physical or emotional pain, but also extend to financial concerns on an ongoing day-to-day basis. That is why we have created this Fifth Season Patient and Family Financial Resource Guide, a comprehensive step-by-step reference designed to simplify a complicated process of evaluating a wide array of financial options and solutions. Our hope is that it may benefit you and your family now – and in the future.
Above all else, our goal in creating this Guide is to help provide you and your loved ones with the peace of mind that is all too often sacrificed during a time of crisis and caregiving. Ultimately, we trust that by helping you to realistically quantify your financial situation, this information also will enable you to restore and maintain your family’s dignity and overall quality of life.
As a lending institution uniquely and exclusively dedicated to the financial needs of those confronting life-threatening illnesses, we at Fifth Season fully understand the concept that Knowledge Is Power. Consequently, we have made it our goal to help you fund the fight of your life, beginning with this Patient and Family Financial Resource Guide – filled with options, information and new possibilities that you may never have known to explore otherwise – and extending all the way through our own financial solution, The Fifth Season LILOC (Life Insurance Line Of Credit).
And while we also understand that spending time sifting through financial facts and figures is the last thing you want to do at such a sensitive time, there are plenty of Bigger Picture reasons why such a review is essential – and the sooner the better. First and foremost is the reality that the day-to-day consequences of your illness may deliver significant changes in income and expenses to your doorstep practically overnight. Therefore, precisely knowing what your financial situation is today, means understanding what choices you have tomorrow – choices that affect the daily security and well-being of your loved ones. In essence, it enables you to maintain a life-as-usual perspective even in this most unusual and challenging circumstance, which in turn may manifest an emotionally-healing environment for everyone involved.
TAKING CONTROL WHILE FACING A LIFE-THREATENING ILLNESS SUCH AS CANCER
When you or a loved one has cancer, many issues, decisions and difficulties arise. Fortunately, there are numerous national, regional and local support services to help you deal with many of these problems. The first step is learning about the types of services available and where they can be most conveniently and expediently accessed.
This Guide was created to help you familiarize yourself with numerous resources that are available, explore new ways to meet your financial challenges, and ultimately gain peace of mind.
The truth is, worrying about money matters takes its toll on other aspects of your life, from physical health to emotional balance. Therefore, the more proactively you address the new financial changes and challenges that accompany a life-threatening illness, the better things are for you – and for your family.
It is as simple as this: The more you know about your unique situation, circumstances and options, the more you take back control of your life.
YOU HAVE MORE PEOPLE IN YOUR CORNER THAN YOU REALIZE
When you first come face-to-face with the reality of a cancer diagnosis, it is completely natural and human to feel that you are all alone and extremely vulnerable. But what you may not realize is that you are actually surrounded by a diversity of friends, family members, business associates, and supportive organizations with which you may openly and honestly share your circumstances.
By reaching out to these individuals or to one or more of the many caring support groups listed in the back portion of this Patient and Family Financial Resource Guide, you may well discover a world of hope and possibility that you never knew existed. In addition to the resources we have categorized for you, you may also find other organizations specific to your state or local area listed in a special section of your local phone book, offering help and support for a range of needs for cancer patients and caregivers alike.
While no two individuals’ illnesses are exactly the same, there is one thing that everyone with a life-threatening illness shares: Time is of the essence. So in order to expedite matters, it is often advisable to have a lawyer, accountant or financial advisor (discussed further in Step 1) to help you analyze the situation and choose the proactive options that best serve your particular circumstances.
Some people are able to keep working and earn an income while they deal with their illness, which in turn allows them to organize things at a more relaxed pace. For those whose option to work is no longer feasible, the old adage Time Is Money takes on a whole new meaning. Bills keep coming even as income from work is sharply curtailed – or stopped entirely – and the result is all too often a level of stress that is totally counter-productive to healing.
That is why it is vital that you address your financial affairs as soon as possible even if it means asking for help. Once you take a deep breath, start to organize things and set up a basic plan of action, the rest will begin to fall into place. The sooner you get the organizational ball rolling, the better.
As you will see in the following sections of this Guide, we have attempted to simplify the immediate and long-term elements of organizing the business side of your life. Our goal is to enable you and your family to find new ways to experience normal life even in these admittedly abnormal circumstances. Let’s face it – you do not deserve to have a life-threatening illness. No one does. But what you most definitely do deserve is financial peace of mind and the basic right to maintain your overall quality of life.
THE TEN ESSENTIAL GUIDING STEPS TO CLARITY AND CONTROL
Step 1: Organizing Your Thoughts, Paperwork and Details
Create files for bills, important papers and related materials, as well as a master list of names and phone numbers, and thoughts on professional advice.
Step 2: Analyzing Your Income, Expenses and Health Insurance
Review your income and expenses to gain an accurate picture of your current financial situation. Make sure you have adequate healthcare coverage.
Step 3: Reducing Monthly Bills To Expand Options
Analyze your regular expenses and look for opportunities to reduce them.
Step 4: Securing Sufficient Healthcare Coverage
Analyze options if you need, or want, additional healthcare coverage.
Topics include:
- ERISA (Employee Retirement and Income Security Act)
- COBRA (Comprehensive Omnibus Budget Reconciliation Act)
- HIPAA (Health Insurance Portability and Accountability Act)
- ADA (Americans With Disabilities Act)
- Medicare
- Medicaid
- Veterans Benefits
- Special State Programs
- Pharmaceutical Programs
- Options for Those Who are not Employed
Review options in meeting your living expenses.
Topics include:
- General Assistance
- SSI (Supplemental Security Income)
- AFDC (Aid to Families with Dependent Children)
- SSDI (Social Security Disability Income)
- Disability Insurance or Income Protection Plans
- Employer Disability Benefit Plans
Step 6: Setting New Goals and Achieving Them
Goals may be daily, weekly or longer term; they may be practical or they may be dreams – and make plans to achieve your goals.
Step 7: Creatively Analyzing Your Assets
Achieve the goals you set for yourself while working within your financial means.
Topics include:
- Selling Assets
- Leveraging Your Real Estate
- The Reverse Mortgage
- Selling or Renting
- Retirement Resources
- Bankruptcy
- Consumer Credit Counseling Resources
- Life Insurance: The Hidden Asset
Cash Value Loan
Accelerated Benefits
Secured No-Payment Line of Credit
Viatical or Life Settlements
Step 8: Reviewing Your Full Array Of Options
A quick review of the steps in this Guide so you may choose the best solutions for your situation.
Step 9: Knowing Your Unique Rights and Benefits
Individuals facing life threatening illnesses have unique medical, financial and emotional needs, unlike those of any other group.
Step 10: Exploring Organizations and Additional Resources
Learn about the wide array of organizations and resources that may help you at this important time.
STEP 1: ORGANIZING YOUR THOUGHTS, PAPERWORK AND DETAILS
“WHERE DO I BEGIN?”
While it is true that no two people approach organization in the same way, we have devised a basic format here, along with a list of papers you will want to have. If you already have a system that works for you, no problem. But for those who need a sample format, this one is simple and straightforward.
There are two primary reasons to get all your facts and figures organized. The first is to make sure you have all the papers and information you need to conduct your affairs, and if your mind is on other things, to help you remember your regular bills and other obligations. The second is to have your important documents readily accessible.
Again, there are countless ways to do this, but the simplest approach may be to create separate file folders for the following categories:
all bills
all the receipts from the bills you pay each month
information about your regular income (wage stubs, transmittal letters for social security or disability payments)
health insurance policies
health insurance claims filed
health insurance claims paid (each claim that is paid should be stapled to the paperwork for that claim from the “claims filed” folder)
health insurance claim appeals
disability insurance policies
life insurance policies
home insurance policies
papers related to the ownership of your home and any other significant assets (stocks, jewelry, boats, vacation homes, cars, art work, etc.)
tax returns for the last three years
information on your checking, savings, IRA or other bank or investment accounts
your will, advanced medical directives and related papers
power of attorney
Next create a master list of important people and their phone numbers. Include members of your family or close friends who should be notified if something happens to you. Add your clergy, doctors, attorney, accountant, financial advisor, insurance brokers and employer. Also state where to find all the above files, and be sure to send a copy to your lawyer or a trusted family member or friend.
A WELL-INFORMED FINANCIAL ADVISOR Can Be A Major Asset
It may have been suggested you need a professional financial advisor to help you with your income and expense analysis and with planning your financial needs. This may be a good idea, especially if your affairs are rather complicated.
Financial advisors may be lawyers, accountants, investment advisors or certified financial planners.
They also may be a family member or trusted friend with enough experience and “good business judgment” to do the job.
You should have a lawyer for certain matters, particularly the power of attorney, and perhaps an accountant to advise you on conducting financial affairs. You may have a friend or family member who is able and willing to help, someone close to you and that you trust to be there when you need him or her.
If you do not already have a lawyer, the best method for getting one, or any other professional, is to ask a friend for a recommendation. After you explain your situation clearly, here are three questions you should ask any professional advisor:
What, specifically, can you do to help me?
What will your services cost?
- fixed fee versus an hourly fee
- charge for phone calls/contact
How accessible will you be?
STEP 2: ANALYZING YOUR INCOME, EXPENSES AND HEALTH INSURANCE
“I HAVE ENOUGH MONEY FOR TODAY—BUT WHAT ABOUT TOMORROW?”
Review your income, expenses and health insurance coverage to get an accurate picture of your financial situation and determine if your healthcare costs will be covered.
Do I have enough money to pay the bills? Will I have enough money in three months? Do I have to pay all the bills? Can I hold some for later, or reduce what I owe? Do I have the kind of health insurance I need?
Even if you are able to cover all your current monthly and annual expenses, take a hard look at where your income is coming from – employment, social security, disability insurance, income from assets – and how that income may change over time. Then ask yourself: “What specifically is my family spending money on each month?”
If you choose to maintain your current standard of living and have the financial means to do so – no problem. On the other hand, if your illness has caused (or threatens to cause) a sharp drop in your income, then you may find this Guide helpful in developing some workable goals that are both practical and achievable.
CURRENT INCOME SOURCES
First, list all your sources of current income. These may include:
Income from employment
Social Security
Supplemental Security Income
Social Security Disability Income
Short- or long-term disability payments from employer plans
Individual disability policy
Investment or retirement income
Veteran’s benefits
General assistance from government sources
EXPENSES
Review all your bills. Look at those you pay every month: mortgage or rent, fuel, phone, car payments, utilities, credit cards, etc.
Look at the bills you pay quarterly and annually, including property taxes and insurance premiums. These are easy to overlook, and could be an unpleasant surprise if not planned for.
GETTING YOUR HEALTH INSURANCE COVERAGE IN ORDER
Since healthcare costs will be part of your expenses, it is important to assess the quality of your coverage. Review your health insurance policy or employee benefits booklet.
Here are some common items in health insurance policies that will affect your costs:
Lifetime maximums (the maximum amount your insurance company will pay for your healthcare over your lifetime) and how much is left.
Deductibles – there may be a single deductible per year, or there may be deductibles for some or all covered procedures or expenses.
Co-pay amounts required.
Coverage for prescriptions and how you are reimbursed.
Your out-of-pocket maximum amount per year (after which insurance pays 100% of allowable charges).
Differences in coverage between inpatient (hospitalization) and outpatient (home or clinic care).
Check to see what the limits are for outpatient and same-day procedures. Sometimes lab tests and x-rays will be covered only if performed in a hospital or affiliated clinic. What is the coverage for emergency room treatment? Is there a separate deductible?
Here is one of the most important rules to remember: Always ask questions if you do not understand something. Ask for what you need, if you are not getting it. Ask for what you want, if you do not have it. And, if you do not like the answer, ask again, or ask someone else – sometimes you need to speak to a supervisor.
Here are some other points to consider:
If your plan requires that all your care be coordinated through a primary care physician, make sure all appropriate referrals are sent to any consulting physicians.
If a “pre-authorization number” is needed for visits or procedures, record that number in a safe place for future reference should billing problems arise.
If you are having trouble paying co-pays and deductibles for hospital bills, contact the business office supervisor and try to negotiate a smaller monthly payment schedule. For doctor bills, contact the physician’s office manager.
If problems occur, review and follow the appeal or grievance process included in your plan.
If there are still unresolved issues, contact your state insurance commissioner for possible assistance and guidance.
Read your health insurance policy or employee benefits booklet. If you have any questions about the meaning of your coverage, call the claims department directly.
STEP 3: REDUCING MONTHLY BILLS TO EXPAND OPTIONS
“I NEED TO START CUTTING MONTHLY EXPENSES-BUT HOW?”
Now that you have collected your monthly, quarterly and annual bills and organized them, there may be many opportunities to reduce what you have to pay or owe.
If you own a home with a mortgage, you may be able to refinance for a lower monthly payment. If you rent, you may be able to renegotiate the terms of your lease.
Shop around for your other regular monthly services and see what you are offered. Call your current suppliers and ask them if they would consider reducing your rate – sometimes they respond to competition and do not want to lose a valued customer.
Many utility companies have special programs to help individuals reduce their energy costs.
Some states or municipalities may have special programs for senior citizens or individuals with lower incomes to pay reduced property or school taxes.
Examine your insurance policies and see exactly what you are paying for. There may be an old rider or some coverage you no longer need, and eliminating it could lower your premium.
If you have high credit card debt and other outstanding loans, you can often consolidate them for a more favorable interest rate.
Expenses can significantly be cut, if you explore your options.
STEP 4: SECURING SUFFICIENT HEALTHCARE COVERAGE
HEALTH INSURANCE OPTIONS
Healthcare is a central concern for anyone reading this Guide. Clearly, it is also one of the most significant expenses faced by those living with cancer. For the millions of people who lack healthcare coverage or do not have sufficient coverage to meet their needs, there are public and private sources of support. Please consult Step 10 of this Guide for a more complete list of resources and contact information.
ERISA (Employee Retirement Income Security Act). This is a federal law that sets minimum standards for most voluntarily established pension and healthcare plans in private industry to provide protection for individuals who participate in these plans.
There have been a number of amendments to ERISA expanding the protections available to health benefit plan participants. One important amendment, the Consolidated Omnibus Budget and Reconciliation Act (COBRA), provides some workers the right to continue their health coverage for a limited time after they lose their jobs. To be eligible for COBRA coverage, you must have been enrolled in your employer’s health plan when you worked and the health plan must continue to be in effect for active employees. In addition, you must take steps to enroll for COBRA continuation benefits.
Employers must notify their plan administrators within 30 days after an employee’s termination or after a reduction in hours that causes an employee to lose health benefits. Also, the plan administrator must provide notice to individual employees of their right to elect COBRA coverage within 14 days after the administrator has received notice from the employer. Finally, you must respond to this notice and elect COBRA coverage by the 60th day after the written notice is sent or the day healthcare coverage ceased, whichever is later. Otherwise, you will lose all right to COBRA benefits. For further information go to www.dol.gov, or call 866-444-3272.
Health Insurance Portability and Accountability Act (HIPAA). HIPPA is another amendment to ERISA which provides important new protections for working Americans and their families who have pre-existing medical conditions or might otherwise suffer discrimination in health coverage based on factors that relate to an individual’s health. For further information go to www.dol.gov, or call 866-444-3272.
Americans with Disabilities Act (ADA). These federal laws, under the jurisdiction of the U.S. Department of Justice, pertain to job discrimination based on disability or disease. For further information go to www.ada.gov, or call 800-514-0301.
U.S. Equal Employment Opportunity Commission (EEOC). This is the U.S. Government Agency that enforces federal employment discrimination laws. For further information go to www.eeoc.gov, or call 800-669-4000.
Additional programs available through federal or state agencies:
MEDICARE
Medicare is a federal health insurance program available for persons 65 years or older and/or those who have certain disabilities or have End-Stage Renal Disease that requires dialysis.
Medicare consists of two main categories: the “Original Medicare Plan” and the “Medicare Advantage Plan.” Each category is made up of four sub-categories: Part A, Part B, Part C and Part D.
The Original Medicare Plan Overview
The Original Medicare Plan consists of Part A – you have the option of adding Part B and D. You will automatically be enrolled in the Original Medicare Plan unless you specifically choose to join a Medicare Advantage Plan (Part C). This operates as a fee-for-service plan. Most individuals pay a deductible and then a co-pay or co-insurance.
The Original Medicare Plan does not cover everything. Costs that you may incur include co-insurance, co-pays, deductibles, etc. These costs are called gaps. To help cover these costs, you may want to consider purchasing a Medigap policy.
Part A Overview
Part A covers inpatient care and hospice, and home healthcare. Most individuals do not pay a premium for this coverage.
Part B Overview
Part B covers outpatient care, doctor services, therapists, additional home healthcare and approved medical supplies. Most individuals will have to pay a premium to receive this coverage.
Part C Overview
Part C is the combination of Part A and Part B. The main difference in Part C is that it is provided through private insurance companies approved by Medicare. With this program you may have lower costs and receive extra benefits.
Part D Overview
Part D is stand-alone prescription drug coverage insurance. Most individuals have to pay a premium for this coverage. Plans vary and cover different drugs, but all medically-necessary drugs are covered. You may choose what drug plan will be best suited to your needs.
For additional information, contact the Social Security Administration at 800-772-1213, or go to www.ssa.gov.
MEDICAID
Medicaid is a combination of federal and state programs to help cover medical costs. Eligibility depends on your income as well as the ability to meet specific requirements.
Each individual state decides who is eligible and the scope of health services offered. Depending on your state’s rules, you may also be asked to pay a small part of the cost for some medical services.
Low income is only one test for Medicaid eligibility; assets and resources are also tested against established thresholds.
For information about Medicaid contact the State Department of Social Services, or go to www.cms.hhs.gov.
VETERANS ADMINISTRATION (VA)
Veterans Administration Benefits may be available if an individual patient or spouse served in the U.S. Armed Forces.
Acute medical care, medications and long-term care/assistance may be available.
The VA may provide disability payments for Vietnam Veterans who have certain types of cancer and/or peripheral neuropathy (from exposure to Agent Orange).
Contact your local VA representative for coverage, benefits and facilities, or call 800-827-1000, or go to www.va.gov.
SPECIAL PROGRAMS FOR STATE GRANTS
The state in which you live may have special programs or grants for individuals battling a diagnosis of cancer. These programs are usually for emergency hospitalization and basic needs.
Contact: Hospital social workers, hospital finance offices and/or your physician’s office manager would likely have the most up-to-date information regarding these special programs.
Finally, call your elected representatives either in Washington, DC or in your state capital. You will probably be asked to talk to an aide, but the aide will get the message to your representative. Tell them what you need, and what research you have done. They may be able to clear up a problem of eligibility for a federal or state program, or recommend a program with which you are not familiar.
PHARMACEUTICAL PROGRAMS
There are Prescription Assistance Programs from pharmaceutical companies if you cannot afford your prescriptions. For more information either ask your pharmacist or search the Internet for available programs.
WHAT IF YOU NEED, OR WANT, MORE HEALTH COVERAGE?
For some, doctor’s office visits, treatments and regular use of prescription medications are a significant monthly expense, and health insurance that pays for a good portion of these costs is essential.
For others, the biggest worry may be long hospital stays, costly surgeries and post-operative care. Because of the potentially enormous costs involved, this is often referred to as “catastrophic care” – help for out of the ordinary, and usually catastrophic, consequences to one’s finances.
There are companies that specialize in providing insurance coverage for catastrophic illnesses. These policies have very limited, or no coverage, for routine expenses like doctor’s visits or prescriptions, and they generally have very high deductibles – the higher the deductible, the lower your premiums. However, you will have to make a judgment as to your need for this coverage versus your ability to pay for it and the deductible.
Some companies also offer Long Term Care insurance, but again, there are limitations on what is covered, caps on the total benefit payments you may receive, and costly premiums. Your doctor may be able to help you determine if you are likely to require long-term care of the type covered by this insurance.
If you do not have healthcare coverage, you (if your health permits) or your spouse might consider taking a job with a company that offers open-enrollment health plans.
You also may look for group coverage (at rates that are generally far less expensive than individual policies) by joining an association or similar organization. For instance, look into the National Association for the Self-Employed (NASE). The process of becoming a “self-employed” worker is quite simple; your lawyer may advise you on what you need to do.
COMPLEX CARE MANAGEMENT PROGRAMS CAN SIMPLIFY TREATMENT OPTIONS
Complex Care Management Programs are designed to support those individuals that are very sick. Complex Care Management Programs put you in control of your treatment options. Most often these plans will assign a Health Advocacy Team to assist you through the healthcare system and act as an advocate on your behalf. The Health Advocate’s job is to gain a thorough understanding of your situation, then explain all of your treatment options and the possible outcomes of each, to you and your family. With this information, you are able to make informed decisions about the treatment plan that is right for you.
STEP 5: DEALING PROMPTLY WITH CASH SHORTFALLS
“WHAT IF I’M COMING UP SHORT AT THE END OF EACH MONTH?”
There are a number of programs available at the federal or state level that may provide income assistance. Some of these programs are briefly outlined below. There are additional resources listed in Step 10 of this Guide.
GENERAL ASSISTANCE
There are state-funded programs to assist persons with little or no assets and little or no income.
Generally speaking, a qualified person can receive assistance with food, housing and a small monthly check to assist with living expenses.
Contact your State Department of Social Services or StateDepartment of Public Welfare.
SUPPLEMENTAL SECURITY INCOME (SSI)
This is a federal program that provides monthly income for eligible seniors, or those who are blind or disabled and have incomes below federal minimum standards.
The amount of money received is based on financial need, not FICA contributions on earnings previously paid under Social Security requirements.
Usually, eligible persons may also qualify for food assistance and Medicaid on a state level.
If you are on Medicare, SSI will, in most cases, pay your Medicare premiums.
AID TO FAMILIES WITH DEPENDENT CHILDREN (AFDC)
AFDC is a federal benefit program for children with permanent disabilities.
These benefits may also be available for children where one or both parents are disabled, retired or deceased.
An individual cannot receive both SSI payments and payments under the AFDC program; however, a parent or child may be eligible under both programs and can choose whichever one is best.
SOCIAL SECURITY DISABILITY INCOME (SSDI)
Monthly payments under SSDI are based on prior FICA contributions on earnings under Social Security requirements.
Medical requirements for disability are the same as for SSI.
SSDI benefits may be taxable if your income exceeds certain limits.
SSI, AFDC and SSDI may be reached at 800-772-1213, or go to www.ssa.gov.
DISABILITY INSURANCE POLICY OR INCOME PROTECTION PROGRAM
A disability insurance policy or income protection program is a private insurance policy purchased by the insured for which premiums are generally paid by the insured.
These types of policies/programs may also be a benefit you receive from your employer.
These policies/programs are usually based on a percentage of base salary if you become disabled.
These types of policies/programs may interfere with eligibility for state/federal programs that impose income restrictions, such as Medicaid, etc.
Contact: Your employer’s Human Resources/Benefits Director or your insurance agent.
EMPLOYER DISABILITY BENEFIT (SHORT-TERM/LONG-TERM LEAVE)
Short-term disability is usually temporary. If the medical condition does not improve, long-term disability benefits may then take over, with changes in benefits.
An individual must satisfy medical requirements of the disability policy.
This benefit may interfere with eligibility for state/federal programs that impose income restrictions.
Health and life insurance benefits under an employer group policy may be directly affected by the status of the disability.
Contact your employer’s Human Resources/Benefits Director for more information regarding your benefits, options and rights.
STEP 6: SETTING NEW GOALS AND ACHIEVING THEM
“HOW DO I SET GOALS THAT I CAN ALSO AFFORD TO ACHIEVE?”
Take the opportunity to set goals for what you want to accomplish and determine how much it will cost to achieve these goals. Prioritizing goals will help ensure that you put your resources toward accomplishing what is most important to you.
Think of what you would like to accomplish.
Think of what you would like to do for your family,or for a favorite charity; for your church or
synagogue, or for a school you attended;or in your profession, or for a friend.
Think of the standard of living you would like to maintainfor yourself and your loved ones.
List these goals in order of priority. Then take a moment to estimate how much money it may require to accomplish each of these goals. In the sections that follow, we will discuss various options for obtaining the money you will need to realize your goals.
STEP 7: CREATIVELY ANALYZING YOUR ASSETS
“Managing My Assets.”
This section covers how you may still achieve the goals you set for yourself while working within your financial means.
Once you have set your goals and estimated the costs of achieving them, take a look at your available funds. Where there is a shortfall, you may look for alternative financial sources. The good news is that there are several options for you to consider.
It is suggested that you review all the alternatives below and evaluate which may make the most sense for you.
SELLING ASSETS
There are a number of things to consider when you are thinking about selling your assets to obtain cash. Generally, you will want to consider selling resources with minimal tax consequences first.
What is the cost of selling the asset – broker fees, taxes, etc.?
If the asset has increased in value, consult your financial advisor. What are the costs associated with keeping that asset as it grows further? Such costs would include insurance and maintenance and perhaps, mortgage or other financing payments.
Which of your assets might you want to save for your family?
Each person’s circumstances are unique and only you may decide how best to utilize your assets. Keep in mind that there is often a trade-off. For example, you may need to keep your car to visit friends or see your doctor.
The important thing to remember is that you have choices. Furthermore, the choices you make now may have a significant impact on your ability to have options over the longer term – to meet those goals you have planned.
If you decide to sell some of your assets, there are several ways to do this. You may do it simply by advertising in local community newspapers, organizing a yard sale or using an estate auction house; however in this last option, a commission, sometimes substantial, must be paid.
LEVERAGING YOUR REAL ESTATE
If you own real estate, you may have a number of ways to use this asset to generate additional cash.
Refinancing an existing mortgage
A home equity loan or line-of-credit, or a second mortgage
A reverse mortgage
Selling or renting your property
The first three types of financing require that the borrower meet certain standards for income and/or equity in a home. As you research these options, be sure to ask if there are commissions, fees, taxes or other costs. Your financial advisor can lead you through this process.
“Equity” is the difference between the estimated market value of your home, or any asset, and the amount you still owe. You may turn this equity into cash in a number of ways, primarily through a home equity loan or line-of-credit, or a second mortgage.
If you are living on a modest fixed income, you may have difficulty meeting income standards for refinancing, adding a second mortgage or most other “home equity” loans, even though you may have a great deal of equity in your home.
THE REVERSE MORTGAGE
The reverse mortgage got its name because the lender, in effect, pays you every month instead of you paying the lender. Another benefit of the reverse mortgage is that you generally do not have to meet any standard of income (although the amount of equity in your home is a critical factor).
Here is how a reverse mortgage works: You effectively “sell” your house to a lender by signing the deed over to the lender in exchange for the reverse mortgage contract. You then have no more mortgage payments to make, and instead, the bank pays you a fixed monthly amount and you continue to live in the house.
While initially this form of financing may appear attractive, there are several matters to consider before taking such a step.
First, the lender is likely to conservatively appraise the market value of your home. If you are able to sell your home to an individual for what you would consider a fair price, this may be a better option than a reverse mortgage.
Second, you (or your heirs) will no longer own your home.
Third, whatever equity you have in the home, now based on the lender’s appraisal of its value, is the basis for how much the lender will pay you monthly and when this money runs out, the lender owns your home and you will be required to move.
For some who have a life threatening illness, the prospect of being able to live your remaining months or years in your own home – and perhaps have sufficient money to pay for necessary care – may make a reverse mortgage an appealing option.
SELLING OR RENTING
There is always the prospect of simply selling your house on the traditional open market. You may get a higher price than a lender is willing to give you under a refinancing or reverse mortgage option. You will need to consider the amount you will likely get from the sale, subtracting fees and closing costs and considering any tax consequences for you or your estate. And of course you will have to move, perhaps to a rental unit. Also bear in mind that rent payments are not tax deductible, as is the interest portion of home mortgage payments. Think through these trade-offs carefully as you evaluate your options.
RETIREMENT ASSETS
Retirement assets are another option to consider. These include pensions, 401(k)s and IRAs.
If you liquidate these types of assets before you reach the age of 59 ½ , in most cases you will immediately forfeit 10% of the amount you withdraw to the IRS in the form of penalties. Also, you probably will be required to pay federal and state (where applicable) income taxes on the amount withdrawn.
One strategy that may be less expensive for you if you are under 59 ½ is to see if you qualify for a loan secured by the cash value of your pensions, IRAs and 401(k) s. Such loans may involve fees and other costs, and will most likely require monthly payments.
While hardship withdrawal options (based on demonstrating your need for the funds) do exist, the penalties for early withdrawal described above often still apply.
INDIVIDUAL RETIREMENT ACCOUNTS
Under the Taxpayer Relief Act of 1997, individuals may contribute an IRS-designated annual amount to a traditional, tax-deductible IRA or to a Roth IRA, provided they have earned income and are within certain broad income ranges.
Under traditional, deductible IRAs, you pay taxes when you ultimately withdraw money from your IRA, in the meantime your money grows and compounds on a tax-deferred basis. The advantage is that your taxation rate at retirement will often be lower than your taxation rate during your working life.
Under a Roth IRA, contributions are made post-tax, but growth is tax-free; once you put your money in, you never pay taxes on these contributions. Since withdrawals are not reportable income, they will not affect your adjusted gross income during retirement.
There may be tax penalties for withdrawing from either of these accounts. As such, please consult your tax attorney and/or the company from which you purchased the IRA.
BANKRUPTCY
If you cannot meet your debts, bankruptcy is an option. However, declaring bankruptcy creates serious financial considerations that you should discuss with your financial advisor.
CONSUMER CREDIT COUNSELING SERVICES (CCCS)
Across the country, CCCS organizations help people in all segments of the community solve personal money management issues. Through counseling, these organizations work with clients to evaluate their specific situation, their budget and total amount owed, and make an effort to set up a plan for each individual to stabilize their finances and plan for the future.
These organizations offer educational workshops in which participants are able to focus on problem areas including long- and short-term financial goal setting, how to understand and use credit to their benefit, how to survive a lay-off or pay cut, and how to prepare to buy a home.
For assistance in locating an accredited CCCS counselor, visit the National Foundation for Credit Counseling (NFCC) at www.nfcc.org, or call 800-388-2227.
LIFE INSURANCE: THE HIDDEN ASSET
You may not have thought of your life insurance policy as an asset, but through some relatively new products and services, virtually all life insurance policies may be turned into cash.
There are two basic types of insurance: Individual insurance that you purchase yourself and Group insurance obtained through an employer or association. Most group life insurance policies are “term” insurance. Term insurance pays a fixed amount (the face amount) to beneficiaries at the time of the insured’s death. Individual policies can be term, “whole life” (sometimes called universal life) or a combination. Whole life policies invest a portion of the premium payment. These invested funds create cash value that will be added to the initial face value of the policy to increase the amount paid at time of death.
A CASH VALUE LOAN
Most whole life and universal or variable life policies (or that portion of combination policies) have provisions to allow the individual covered by the policy to borrow a percentage of the accumulated cash value at any given point.
Often, the interest rate at which you may borrow these funds is fixed at the time you purchased the policy, and it can be quite low compared with current rates for other forms of borrowing. This option generally is only available on more expensive forms of individual coverage.
Taking a loan from the cash portion of your life insurance policy may be a relatively inexpensive way to obtain cash. In most cases, you need only pay the interest each year; you do not have to pay back the principal (the amount borrowed). But, if you do not pay back the principal, you do two things: (1) you reduce the amount the insurance company has to invest on your behalf to create greater cash value, and (2) you reduce the amount your survivors will receive at the time of your death.
ACCELERATED BENEFITS
If your policy has a provision (or “rider”) allowing the payment of accelerated benefits, this means you may elect to take a portion of the face value, or death benefit, while you are still living. The maximum amount of cash you may receive typically ranges between 25% and 50% of the total benefit amount of the policy. The remainder will then be paid to your survivors at the time of your death.
In most cases, these benefits cannot be used unless your life expectancy is 12 months or less, which must be substantiated by medical records and verified by the insurance company physician. And, it is possible that receiving the lump sum funds may jeopardize your eligibility for financial aid programs with income limits.
SECURED NO-PAYMENT LINE OF CREDIT
A secured no-payment line of credit is based on your life insurance policy’s face value. Whereas in most cases accelerated benefits limit the amount you may obtain to a range of 25% to 50% of your policy’s face value, a secured line of credit may provide up to 75% of the face value of the life insurance policy.
There are a number of other factors that distinguish the secured no-payment line of credit from other forms of financing – and especially from other methods of using your life insurance policy to generate cash.
These factors include:
No credit check or physical examination is required, though to determine your medical eligibility a review of your medical records will be conducted.
There are no monthly payments on the line of credit, and further premium payments are advanced on your behalf and repaid out of the policy proceeds.
Generally, there are no federal or state income or estate tax consequences.
The line of credit may be approved and funded in as little as two to four weeks.
Secured lines of credit generally do not impact your eligibility for state or federal income restricted programs like Medicaid.
There are no costs to apply. Upon line of credit funding, an origination fee is charged to your line of credit and is paid upon collection of the life insurance proceeds.
The line of credit is paid back from insurance policy proceeds, so there is no personal liability (“non-recourse”).
Survivor benefits are preserved and proceeds from the policy beyond what is necessary to repay the line of credit, plus interest, fees and advanced premiums will be passed on to your designated beneficiaries.
This secured no-payment arrangement is a line of credit, which means you may use what you need when you need it, and you will only owe what you borrow.
There are no restrictions on how the funds may be used.
It is important to remember that the full balance of your life insurance policy proceeds above and beyond repayment of advances, origination fees, premium payments and interest generally are paid tax-free directly to your beneficiaries.
The secured line of credit can be made on most forms of life insurance policies – term, whole life or a combination – as long as your policy is “assignable” and beyond the two year contestable period. You also must be prepared to have your medical records evaluated to confirm that your life expectancy is five years or less to qualify.
Peace of mind is the bottom line in this secured no-payment line of credit. Importantly, if you survive beyond the five years, the line of credit will continue to be payable out of policy proceeds, and neither you, nor your estate, will have any personal liability.
For more information on secured no-payment lines of credit call toll-free 866-459-1271, or go to www.fifthseasonfinancial.com.
LIFE SETTLEMENTS
A life settlement (commonly called a viatical settlement) involves selling your life insurance policy to a company in return for cash. The amount offered by the viatical company is a reduced percentage of the face value of the policy. As the new owner of the policy, the company pays all future premiums and collects the policy’s full benefits when the policy matures.
Unlike accelerated benefits, viatical companies will usually purchase policies from individuals who have life expectancies of up to five years. There are no restrictions on how the money may be used.
If you decide to research viatical companies, here are some suggested questions to ask:
Does my insurance policy qualify for purchase?
Would you consider buying my policy, based on my state of health?
What are the fees and costs associated with purchasing my policy?
What is the actual amount of money I may expect to receive, and when will I receive it?
What are the tax implications? (HIPAA enables individuals to collect a viatical settlement without having to pay income taxes on the proceeds if a physician certifies that the person holding the policy has a life expectancy reasonably estimated at 24 months or less. Please consult the complete HIPAA guidelines for the exact language).
Who will have access to my medical records?
How do you check on my health status? Should I expect calls or letters inquiring into my health status?
Will I need to take a physical exam?
For more information, call the Life Insurance Settlement Association of America at 877-382-4357, or visit www.lisassociation.org. Brochures are also available by calling the Federal Trade Commission at 202-326-2222.
Comparison of Secured No-Payment Line of Credit with |
|||||
Line of Credit |
|
Life Settlement |
|
ADB’s |
|
|
Up to 75% of the face amount of the life insurance policy may be borrowed |
|
Lower net proceeds as a percentage of the face amount of the life insurance policy |
|
Typical lending amounts of 25% to 50% of the face amount of the life insurance policy |
|
|
Nurse case manager ensures that the customer efficiently is moved through the process |
|
No specifically-trained primary contact to meet the needs of the insured |
|
No specifically-trained primary contact to meet the needs of the insured |
|
|
Insurance policies are used as collateral for credit, not sold |
|
Life insurance policies are sold; life settlement also known as a Viatical |
|
The policy, or a portion of it, is accelerated as a loan with interest accrued |
|
|
There are generally no tax consequences as the line of credit proceeds are not considered income |
|
Sales proceeds are a taxable event when life expectancy is over 24 months |
|
Generally non-taxable, but not always |
|
|
Residual financial interest is returned to the customer’s family, loved ones or friends |
|
All residual interest goes to the life settlement provider; the insured’s family, loved ones, or friends receive no proceeds |
|
Any portion of the insurance policy not accelerated remains in force subject to a decrease by the amount of the interest accrued from the accelerated amount |
|
|
Line of credit may be underwritten against individual or group life insurance |
|
Only works with individual life insurance coverage; will not work with group life insurance policies |
|
ADB’s only work where the policy has an ADB provision |
|
|
Periodic re-evaluation allows for increased credit amounts, if needed |
|
No re-evaluation; the provider makes one lump-sum payment to the insured |
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No adjustment of accelerated amount |
|
|
Funds available without restrictions |
|
Funds are brokered and as a result may be extremely volatile and unreliable, especially in times of great financial need |
|
Not well-marketed and is a lengthy process; premium and interest payments may be required |
|
|
Two-to-four week processing time |
|
Processing time of well over four-to-six weeks |
|
Two-to-three month processing time |
|
WHAT OPTIONS DO I HAVE LEFT IF I DO NOT HAVE LIFE INSURANCE?
If you are among those without a life insurance policy, there are a number of solutions. You’ve probably seen advertisements for insurance policies that promise “no health exam, you cannot be denied.” These are real insurance policies called guaranteed issue or special issue policies. They were created to fill the need of people who have no policy or who want additional insurance. Make sure the policy truly is a life insurance policy, not just an accidental death policy. There may also be a two-year waiting period to qualify. Keep in mind that premiums for this type of insurance are among the highest in the industry.
STEP 8: REVIEWING YOUR FULL ARRAY OF OPTIONS
“I’M FEELING A BIT OVERWHELMED”
The following questions will serve as a checklist to help you review the steps detailed in this Guide, and to help properly evaluate the various options available to you.
Do you have a financial advisor or someone else you may trust in that capacity?
Do you have health insurance?
If not, can you secure health insurance through employment?
Have you evaluated which public resources you might qualify for – Medicare, Medicaid, Social Security, Veteran’s Benefits, etc?
Have you carefully set your goals and then reviewed your financial resources?
Do your goals include leaving assets or funds to beneficiaries?
Do you need extra income to cover medical expenses or alternative treatments?
Are there other areas you would like to focus on – trips with family, friends, etc?
Have you evaluated the implications of early withdrawal of retirement benefits?
Do you have assets to sell?
Have you arranged these assets according to high tax/low tax implications, as well as those that are critical and not critical?
Do you own your house?
Have you evaluated the benefits of selling and renting, versus a reverse mortgage, or other forms of financing?
Do you have assignable life insurance?
If not, have you looked at options to purchase life insurance?
Have you carefully reviewed all the benefits and drawbacks of the options available to tap into the value of your life insurance policy, considering your state of health, size of policy, tax implications, and beneficiaries?
Have you compared your potential income sources against your priority goals?
Have you left some income flexibility based on a longer-than- anticipated life expectancy?
STEP 9: KNOWING YOUR UNIQUE RIGHTS AND BENEFITS
“I SEE THAT I HAVE OPTIONS, BUT DO I ALSO HAVE ANY RIGHTS?”
If you have been diagnosed with a life-threatening disease you may have experienced difficulties in securing the elements essential to maintaining adequate quality of life: respect, hope, peace of mind and appropriate care.
Having sufficient financial resources can be critical to attaining these vital components. At a time when you are at your most vulnerable, you have certain “rights.”
YOU HAVE THE RIGHT TO:
Be treated with respect.
Set goals and have hope.
Receive appropriate care and have the opportunity to consider complementary or alternative treatments.
Live with dignity.
Be told the truth.
Participate in decisions that affect you.
Know who has access to your medical records.
Maintain physical, emotional and financial control over your life to the extent you are able.
Whether we like it or not, financial circumstances really do have a direct and daily impact on most families who are dealing with a life-threatening illness. For some, having enough money simply means having what it takes to cover the basics – food, clothing, shelter, transportation and necessary healthcare. For others, however, it also means obtaining enough money to have additional options and achieve specific goals – making certain that a long-anticipated wedding is celebrated in style, taking a family trip that has been a lifelong dream, or seeing a child off to college the way it was always planned. And while it means something different to every family, one thing remains the same: quality of life is often determined by the degree of financial security one possesses.
If this Patient and Family Financial Resource Guide has given you a new sense of hope, helped to reduce the level of stress associated with your circumstances, and supplied you with the necessary tools and resources to explore your options more effectively and expeditiously, then we feel we have accomplished our goal of helping you and your family start living fully in the moment.
As we explained in the beginning, when you are in the fight of your life, information can be your strongest ally. Our hope is that you now know for certain that you are not in the fight alone.
STEP 10: EXPLORING ORGANIZATIONS AND ADDITIONAL RESOURCES
“WHO CAN I CONTACT FOR SUPPORT AND WHERE DO I FIND THEM?”
The Patient and Family Financial Resource Guide is a compilation of organizations, addresses, phone numbers and websites that provide vital information and support for patients, families and caregivers. Though the websites listed may provide assistance to you, there is no guarantee of your ability to access information on each website, or of the accuracy of all content on a given website. Information provided in The Patient and Family Financial Resource Guide is not in any way meant to replace or override interactions with your doctor, financial advisor or other persons on your care team. Your care team may also have additional recommendations of websites, community organizations or service providers that may best meet your individual needs.
NATIONAL CANCER ORGANIZATIONS
The American Cancer Society (ACS) www.cancer.org
1875 Connecticut Ave., NW, Washington, DC 20009
Toll Free: 800-ACS-2345
The American Cancer Society is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives and diminishing suffering from cancer through research, education, advocacy, and service.
The ACS’s National website, found at www.cancer.org, is a comprehensive site containing valuable resources on prevention and risk factors, detection, treatment methods, and services for cancer patients and their families. Practical information, ideas, answers to common questions and tips are available, as well as specific resources in your community.
CancerConsultants.com www.cancerconsultants.com
The mission of CancerConsultants.com is to provide interested individuals, cancer patients, and their families and caregivers access to the most current information about the prevention, screening, treatment and overall management of cancer.
HEALTH PLANS AND INSURANCE
CompuQuotes www.compuquotes.com
Search this website for Guaranteed-Issue Life Insurance Referrals
U. S. Department of Health and Human Services
Healthcare Financing Administration
410-786-5505 www.hrsa.gov
200 Independence Ave., S.W. www.hhs.gov
Washington, DC 20201
“Guide to Health Insurance for People with Medicare”
U. S. Department of Labor
Toll-Free Hotline: 866-444-EBSA www.dol.gov
Medicare Hot Line: 800-633-4227
Frances Perkins Building
200 Constitution Avenue, N.W., Washington, DC 20210
MIB, Inc. (Medical Information Bureau)
Toll Free: 866-692-6901 www.mib.com
PO Box 105, Essex Station, Boston, MA 02112
EMPLOYMENT ISSUES
U. S. Equal Employment Opportunity Commission (EEOC)
Toll Free: 800-669-4000 www.eeoc.gov
1801 L Street, N.W., Washington, DC 20507
U.S. Department of Justice Access Unit, Civil Rights Division
Toll Free: 800-514-0301 www.usdoj.gov
Disability Rights Section NYAV
950 Pennsylvania Avenue, N.W., Washington, DC 20530
FINANCIAL ISSUES
Fifth Season Financial Corp
Toll-Free: 866-459-1271 www.fifthseasonfinancial.com
P. O. Box 192409, Dallas, Texas 75219-8519
Financial Assistance for Cancer Patients and Their Families
American Association of Retired Persons (AARP)
Toll Free: 888-687-2277 www.aarp.org
601 E Street, N.W., Washington, DC 20049
Compassion & Choices
Toll Free: 800-247-7421 www.compassionandchoices.org
P.O. Box 101810, Denver, CO 80250-1810
Durable Power of Attorney and Living Will Forms and Instructions
Internal Revenue Service (IRS)
Toll Free: 800-829-1040 www.irs.gov
Social Security Administration (SSA)
Toll Free: 800-772-1213 www.ssa.gov
Information about Social Security Programs
U.S. Department of Veteran’s Affairs (VA)
Toll Free: 800-669-8477-VA Insurance Center
Toll Free: 800-827-1000-VA Main Number www.va.gov
Veteran’s Insurance Coverage
GovBenefits.gov
Toll free: 800-FED-INFO (333-4636) www.govbenefits.gov
This program links people to government benefits and provides information about how to apply for those benefits.
FINANCIAL COUNSELORS
Most hospitals and treatment centers have financial counselors who may help with financial and insurance concerns. Contact your hospital or treatment facility for more information.
FUNDRAISING
Fundraising is one way to cover the costs of cancer treatment. The organizations in this Guide and your local libraries are good places to find fundraising information.
INCOME TAXES AND LEGAL ASSISTANCE
Internal Revenue Service (IRS) www.irs.gov
Toll Free: 800-829-1040
LawHelp www.lawhelp.org
LawHelp answers questions about legal rights and provides
information about free legal aid programs in the United States.
FOUNDATIONS OFFERING FINANCIAL ASSISTANCE
DeAnna Favre HOPE Foundation www.deannafavre4hope.com
Helps pay medical expenses for uninsured/under insured breast
cancer patients.
The Healthwell Foundation
Toll free: 800-675-8416 www.healthwellfoundation.org
This foundation provides assistance to those who cannot afford insurance co-payments, premiums, or other healthcare costs.
Hill-Burton Free and Reduced Cost Healthcare
Toll free: 800-638-0742 www.hrsa.gov/hillburton
This program requires several U.S. medical facilities to provide free or low-cost care to eligible patients.
The Leukemia & Lymphoma Society (LLS)
Toll free: 800-955-4572 www.lls.org
The LLS financial aid program offers people with blood-related cancers up to $500 a year for drugs, travel, and treatment costs.
Limbs for Life
Toll free: 888-235-5462 or 405-843-5174 www.limbsforlife.org
Limbs for Life provides funding for prosthetics and prosthetic care for individuals who cannot otherwise afford it.
The Lance Armstrong Foundation
Toll free: 866-467-7205 www.livestrong.org
The LIVESTRONG SurvivorCare program offers information about financial, employment, and insurance issues.
Lymphoma Research Foundation (LRF)
Toll free: 800-500-9976 www.lymphoma.org
LRF offers up to $500 per year to lymphoma patients who have quality-of-life expenses not covered by insurance.
Make-A-Wish Foundation
Toll free: 800-722-WISH (9474) www.wish.org
The Make-A-Wish Foundation grants a special wish for children age 18 or younger who have a life-threatening illness.
Making Memories Breast
Cancer Foundation www.makingmemories.org
This program grants wishes to patients with metastatic
breast cancer so they may create lasting memories with loved ones.
Medicare
Toll free: 800-MEDICARE (633-4227) www.medicare.gov
This government insurance program is for individuals who are age 65 or older and for individuals with permanent disabilities.
National Brain Tumor Foundation (NBTF)
Toll free: 800-934-CURE (2873) www.braintumor.org
National Breast and Cervical Early Detection Program (NBCCEDP)
TTY: 888-232-6348 www.cdc.gov/cancer/nbccedp
Toll free: 800-CDC-INFO (232-4636)
NBCCEDP provides free or low-cost breast and cervical screenings to women who meet age and income guidelines.
National Children’s Cancer Society
314-241-1600 www.nationalchildrenscancersociety.com
The National Children’s Cancer Society provides financial assistance related to treatment expenses for children with cancer.
National Foundation for Transplants (NFT)
Toll free: 800-489-3863 www.transplants.org
NFT provides fundraising assistance and advocacy for transplant patients and their families.
National Insurance Consumer Help Line
212-346-5500 www.iii.org
Insurance Information Institute.
National Organization for Rare Disorders (NORD)
TDD: 203-797-9590
Toll free: 800-999-6673 www.rarediseases.org
NORD’s assistance programs help uninsured or under-insured individuals with rare diseases pay for needed medications.
NeedyMeds www.needymeds.com
NeedyMeds provides information about programs that help patients with the costs of their prescription medications.
Partnership for Prescription Assistance
Toll free: 888-4PPA-NOW (477-2669) www.pparx.org
This program helps patients receive medicines they need through public or private assistance programs.
Patient Access Network Foundation
Toll free: 866-316-PANF (7263) www.patientaccessnetwork.org
This foundation provides financial support for out-of-pocket medication costs to treat several types of cancer.
Patient Advocate Foundation
Toll free: 800-532-5274 www.patientadvocate.org
Co-Pay Relief Program
Toll free: 866-512-3861 www.copays.org
This foundation helps with insurance, job retention and debt issues. Their co-pay relief program provides financial assistance to insured patients with certain cancers.
Patient Services Inc. (PSI)
Toll free: 800-366-7741 www.uneedpsi.org
PSI subsidizes health insurance premiums and pharmacy
co-payments for people with rare disorders and some cancers.
Social Security Administration (SSA)
TTY: 800-325-0778
Toll free: 800-772-1213 www.ssa.gov
The Social Security Administration provides supplemental income and disability benefits to those who meet certain criteria.
State Children’s Health Insurance Program (SCHIP)
Toll free: 877-KIDS-NOW (543-7669) www.insurekidsnow.gov
SCHIP offers low-cost or free health insurance to uninsured infants, children and teens.
Sunshine Foundation
215-396-4770 www.sunshinefoundation.org
The Sunshine Foundation grants wishes for children who are physically challenged, are seriously ill or have been abused.
Together Rx Access
Toll free: 800-444-4106 www.togetherrxaccess.com
Together Rx Access offers a free discount card to U.S. residents who do not have prescription drug coverage.
United Way of America http://national.unitedway.org
United Way offices across the nation provide services and referrals to people financially struggling. Check the telephone directory or go online to find an office near you.
Veteran’s Affairs (VA)
Toll free: 800-827-1000 www.va.gov
Eligible veterans and their dependents may receive cancer screening and treatment at VA Medical Centers.
SOCIAL WORKERS
Social workers at your treatment facility may help you find and apply for financial aid programs and services. Contact your facility’s social work office for more information.
GENERAL INFORMATION
Association of Community Cancer Centers (ACCC)
301-984-9496 www.accc-cancer.org
11600 Nebel Street, Suite 201, Rockville, MD 20852
ACCC is the national interdisciplinary organization that promotes the entire continuum of quality cancer care for patients and communities. ACCC fulfills their mission by pursuing the following six strategies: Patient Advocacy, Quality and Economic Issues, Research in the Community, Cancer Program Management, Leadership in Policy Development and Promotion, and Support for Members. Their website includes the latest news on public policy, oncology drugs and products, and state agencies and meetings.
Patient Advocate Foundation
Toll Free: 800-532-5274 www.patientadvocate.org
The Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to diagnosis through case managers, doctors and attorneys. The Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment
and preservation of financial stability.
U.S. Public Health Services Office of Women’s Health
Toll Free: 800-994-9662 www.womenshealth.gov
200 Independence Avenue, SW, Room 730B, Washington, DC 20201
This office provides national leadership in women’s health through public policy, research, service delivery and education. Programs include more than fifty Centers of Excellence in Women’s Health, which serve as models of integrated and comprehensive women’s health research and clinical services, including regular screening for breast, ovarian and cervical cancers.
Association of Cancer Online Resources
(ACOR) www.acor.org
ACOR provides access to oncology mailing lists and electronic groups; an excellent resource for people with cancer who wish to find others with their same diagnosis.
Alpha Cancer Information Resource www.alphacancer.com
The Alpha Cancer Information Resource is the health education website of the Coalition of National Cancer Cooperative Groups. This site offers articles, book recommendations and webcasts (lectures and discussions via the world wide web) focusing primarily on breast cancer, lung cancer, colon cancer and general cancer awareness.
American Society of Clinical Oncologist (ASCO) www.asco.org
The mission of ASCO is to facilitate the delivery of high quality healthcare; foster the exchange and diffusion of information and ideas related to cancer, including the biology, diagnosis, staging, treatment, and psycho-social impact of cancer; further the training of all persons in clinical research and in the total care of patients with cancer; and encourage
optimal communication among the various specialties concerned with cancer. It is the premier trade association for Oncologists and its website contains an extraordinary amount of cutting edge information. Though primarily geared towards physicians, patients and family members may find useful information under the section “People Living with Cancer”.
Blood and Marrow Transplant
Information Network www.bmtnews.org
This site provides information and emotional support to those contemplating or undergoing blood or marrow transplant and their families.
CancerCare www.cancercare.org
Cancer Care is a non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral, and direct financial assistance.
Cancer Education.com www.cancereducation.com
This website’s mission is to improve cancer care through the dissemination of up-to-date and accurate educational programming and information for healthcare professionals, cancer patients and their family members. The site has resources for finding physicians and treatment centers, and features video and animation about common types of cancer.
CancerHelp www.cancerhelp.8m.com
CancerHelp provides a broad list of cancer-related websites, bulletin boards and chat groups.
Cancer News on the Net www.cancernews.com
Cancer News on the Net is dedicated to bringing patients and their families the latest information on cancer diagnosis and treatment.
Comprehensive Women with Cancer Information www.wcn.org
The mission of this website is to be the most comprehensive and accurate source of cancer information for women and services available online. This site is designed for both those affected by the disease, and for professionals. Features include treatment and advocacy information, a consumer drug guide, and support groups.
Chemocare.com www.chemocare.com
Chemocare.com is a program of the Scott Hamilton CARES initiative
and is a reliable source for chemotherapy, chemotherapy side effects and chemotherapy drug information.
Facing Our Risk of Cancer Empowered
(FORCE) www.facingourrisk.org
FORCE is a nonprofit organization for women who are at high risk of getting breast or ovarian cancer due to their family history and genetic status, and for members of families in which a BRCA mutation may be present. The FORCE website can be a helpful resource for anyone who knows she is at risk, who wonders whether she might be at risk, or who cares about the issues and concerns that face those at risk.
Cancer Index.org: A Guide to
Internet Resources for Cancer www.cancerindex.org
This site contains links to cancer related information organized by disease, country, treatments, and other topics.
HBO’s Cancer: Evolution to
Revolution Website www.hbo.com/docs/programs/cancer/
Sponsored by HBO, and begun in conjunction with their television program, Cancer: Evolution to Revolution, this website includes details about screening, treatments, andclinical trials, becoming an active patient and finding support groups.
International Cancer Alliance (ICA)
301-656-3461 www.icare.org
4853 Cordell Avenue/Suite 14
Bethesda, MD 20814
The ICA provides a free cancer therapy review that includes information on specific cancer type, detection and staging, treatment, tests, clinical trials and more. There also is a cancer breakthrough report sent quarterly that may be ordered through this site.
Web MD www.webmd.com
This site provides high quality information and interactive tools to help patients and their families manage their daily personal health. Search the Web MD site for cancer references. Web MD Health is committed to providing authoritative medical content written for the consumer as well as access to professional-level content.
Cancer Hope Network www.cancerhopenetwork.org
Provides support by matching patients with trained volunteers who have themselves undergone a similar experience.
National Coalition for Cancer
Survivorship (NCCS) www.canceradvocacy.org
This is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors. They believe that access to credible and accurate patient information, such as their award-winning Cancer Survival Toolbox is key to demanding and receiving quality cancer care.
Cancer Book Store www.wellnessbooks.com
CRI HelpBook www.cancerresearch.org
This site, sponsored by the Cancer Research Institute, provides access to a variety of publications, including What to do if Cancer Strikes. This particular publication provides useful information about how to talk to your doctor when you are diagnosed, information about treatments and clinical trials, and a resource directory.
National Library of Medicine www.nlm.nih.gov
This is the official website for the National Library of Medicine. On this site you may search a variety of databases for journal articles and books on any area of medical interest.
What You Need to Know
about Cancer www.cancer.gov/cancer_information
Produced by the NCI, and available at the web link above, What You Need to Know about Cancer is a booklet packed with important information about cancer. Chapters includeinformation about diagnosis, treatments, emotional issues and support.
PUBLICATIONS
COPING With Cancer Magazine
615-790-2400 www.copingmag.com
P.O. Box 682268, Franklin, TN 37068-2268
Consumer magazine for people whose lives have been touched by cancer.
CURE Magazine
Toll Free: 800-210-2873 www.curetoday.com
A quarterly magazine with an annual Resource Guide that combines the science and humanity of cancer.
Women & Cancer Magazine www.womenandcancermag.com
Offering content to heighten awareness for women who have been diagnosed as well as those interested in prevention and wellness.
INFORMATION BY DISEASE
Brain Cancer
The American Brain Tumor Association www.abta.org
Within the American Brain Tumor Association website, find help in their “Care and Support” section. Link here to read other people’s stories of hope, get information about managing side effects and symptoms, and connect to a pen pal.
National Brain Tumor Foundation (NBTF) www.braintumor.org
Toll Free: 800-934-2873
This non-profit health organization provides information and support to brain tumor patients, family members, and healthcare professionals.
Breast Cancer
DeAnna Favre HOPE Foundation www.deannafavre4hope.com
Helps pay medical expenses for uninsured/under insured breast
cancer patients.
National Breast Cancer Coalition (NBCC)
Toll Free: 800-622-2838 www.natlbcc.org
This coalition is dedicated to the eradication of breast cancer by action, policy and advocacy. This site provides details on the group’s legislative activities, advocacy training and public policy initiatives. Information is included about members of Congress who have been supportive of NBCC’s goals.
Susan G. Komen Breast Cancer Foundation www.komen.org
The Komen Foundation’s mission is to eradicate breast cancer as a life threatening disease through research, education, screening and treatment. This website provides information on research, upcoming events, where to get additional information about breast cancer and how to access community support for patients and families.
Mothers Supporting Daughters with Breast Cancer
410-778-1982 www.mothersdaughters.org
This organization is designed to help mothers who have daughters battling breast cancer. Support services are provided free of charge and include contacts with volunteers through email, letters and phone calls, as well as a variety of special publications.
National Alliance of Breast
Cancer Organizations (NABCO) www.nabco.org
NABCO is a non-profit coalition of over 370 organizations that provides information regarding breast cancer detection, treatment, clinical trials, internet resources and links to local breast cancer support groups.
SHARE: Self-help for Women with Breast or Ovarian Cancer
Toll Free: 866-891-2392 www.sharecancersupport.org
SHARE is a non-profit organization providing information lines in both English and Spanish for breast and ovarian cancer. This site offers information, programs and other resources and support.
Y-Me National Breast Cancer Organization
Toll Free: 800-221-2141-English www.y-me.org
Toll Free: 800-986-9505 Spanish
This organization provides general information about breast cancer support services, information on screening and detection, information for men and women with breast cancer, and information for family members and loved ones. Additionally they provide support group services, information and advocacy.
Colon Cancer
Colon Cancer Alliance (CCA) www.ccalliance.org
The Colon Cancer Alliance (CCA) is a national patient advocacy organization dedicated to ending the suffering caused by colorectal cancer. This site provides patient support, education, research and advocacy.
Leukemia/Lymphoma
Lymphoma Research Foundation of America
of America www.lymphoma.org
This site provides educational and emotional support programs for lymphoma patients and their families.
The Leukemia & Lymphoma Society www.lls.org
The Leukemia & Lymphoma Society's mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of patients and their families. This comprehensive website provides patient aid, family support, and informational resources geared specifically for those with blood-related cancers.
Lung Cancer
American Lung Association www.lungusa.org
“Improving Life One Breath at a Time”
The mission of the American Lung Association is to prevent lung disease and promote lung health through advocacy, research, public, patient and professional education.
Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE) www.alcase.org
ALCASE is a nonprofit organization dedicated to helping those living with lung cancer to improve the quality of their lives through advocacy, support and education.
Lung Cancer Online www.lungcanceronline.org
This site serves as a gateway to lung cancer resources for those with lung cancer and their families. This site has links and list services for resources concerning care, support, treatment, tests and procedures for lung cancer.
Gynecological Cancers
Gilda’s Club Worldwide
Toll Free: 888-GILDA-4-U www.gildasclub.org
A worldwide group of independent affiliates whose mission is to offer social and emotional support for individuals, families, and friends of those affected by cancer.
Gilda Radner Familial Ovarian Cancer Registry
Toll Free: 800-682-7426 www.ovariancancer.com
This registry tracks families with a history of ovarian cancer, offers a help line, education, information, and peer support for women with a high risk (family history) of ovarian cancer.
The International Newsletter for Those Fighting Ovarian Cancer
806-355-2565 www.ovarian-news.org
This site allows you to view a monthly newsletter written by an ovarian cancer survivor. The newsletter reports on treatment options, clinical trials, coping skills, and early detection strategies. It offers a humorous and upbeat tone, as well as a networking service to match women in similar circumstances.
National Cervical Cancer Coalition (NCCC) www.nccc-online.org
This coalition is a grassroots nonprofit organization dedicated to serving women with, or at risk for, cervical cancer and HPV disease.
National Ovarian Cancer Coalition (NOCC)
Toll Free: 888-682-7426 www.ovarian.org
NOCC’s mission is to raise awareness and promote education about ovarian cancer. The coalition is committed to improving the survival rate and quality of life for women with ovarian cancer.
Ovarian Cancer National Alliance
Toll Free: 866-399-6262 www.ovariancancer.org
The Ovarian Cancer National Alliance’s purpose is to increase public and professional understanding of ovarian cancer, and to advocate for more effective diagnostics, treatments and a cure. Available materials include awareness information and national policy issue papers.
The Ovarian Cancer Research Fund, INC (OCRF)
212-268-1002 www.ocrf.org
The Ovarian Cancer Research Fund is dedicated to the formulation of early diagnostic treatment programs and research towards the ultimate conquest of ovarian cancer. Explore this website to learn more about the work of their Scientific Advisory Committee, the research being conducted and the most up-to-date information about this disease.
SHARE: Self-help for Women with Breast or Ovarian Cancer
Toll Free: 866-891-2392 www.sharecancersupport.org
SHARE is a non-profit organization providing information lines in both English and Spanish for breast and ovarian cancer. They offer information, programs and other resources and support.
Women’s Cancer Network www.wcn.org
Women’s Cancer Network was developed by the Gynecological Cancer Foundation for women and their families to keep them informed and enable them to be their own health advocates. This is an interactive website dedicated to informing women around the world about gynecologic cancer.
Urological Cancers
American Urological Association
Foundation www.urologyhealth.org
This site was established to support and promote research, patient/public education and advocacy to improve the prevention, detection, treatment and cure of urologic disease.
Us Too International, Inc. www.ustoo.com
Us Too is a prostate cancer support group organization whose goals are to increase awareness in the community, provide information about treatment and disease, and to offer support to men who have been diagnosed, and to their spouses/partners and families.
The Kidney Cancer Association www.kidneycancer.org
The Kidney Cancer Association is a charitable organization who funds, promotes and collaborates with NCI, ASCO, AUA and other institutions on research projects. They educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels.
The Lance Armstrong Foundation (LAF)
Toll Free: 866-467-7205 www.livestrong.org
The LAF focuses on cancer prevention, access to screening and care, research and quality of life for cancer survivors.
Oral, Head and Neck Cancers
The Oral Cancer Foundation www.oralcancerfoundation.org
The Oral Cancer Foundation is a national non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy and support activities. This site is designed to bring as much information on topics related to oral cancer together in a single site.
Support for People with Oral, Head,
and Neck Cancer, Inc. www.spohnc.org
This is a patient-directed, self-help organization dedicated to meeting the needs of oral, head and neck cancer patients. This site addresses the broad emotional, physical and humanistic needs of this population.
Skin Cancer
Melanoma Patients Information Page www.mpip.org
This site provides patients with melanoma the information and support they need to be proactive in their treatment decisions.
The Skin Cancer Foundation www.skincancer.org
The Skin Cancer Foundation is the only national and international organization that is concerned exclusively with the world's most common malignancy – cancer of the skin. This website provides information on how to perform a self-examination, and more detailed information about the three types of skin cancer: melanoma, basal cell and squamous cell.
Health and Wellness
Estronaut www.estronaut.com/n/cancer.htm
Estronaut is considered a forum for women’s health. As a website, they focus on the many different aspects of health and women. The link above will bring you directly to their site on cancer, which includes a variety of articles and online support groups.
National Human Genome Research Institute www.genome.gov
(Then click on Health, and then click on Family History Initiative)
This site will aid you in building and understanding your medical family history and assessing your cancer risk. It discusses the importance of doing a medical family tree.
Diet and Nutrition
American Institute for Cancer Research
Toll Free: 800-843-8114 www.aicr.org
Based on the premise that most cancers can be prevented, the American Institute for Cancer Research is a national cancer organization specializing in the field of diet, physical activity and weight management as it relates to cancer prevention. On this site you will find news, research updates, recipes, free publications and tips for good health.
Cancer Nutrition Center www.cancernutrition.com
The Cancer Nutrition Center site will help you understand the impact of nutrition on your health. Recommendations for diet during treatments are available, as well as general diet and nutrition information.
Alternative, Holistic and Complimentary Medicine
American Academy of Family Physicians www.familydoctor.org
Go to Healthy Living Section. Mind/body connection/nutrition and exercise, reducing your cancer risk along with numerous other health topics.
Health World.com www.healthy.net
Health World Online is a 24-hour health resource center – a virtual health village where you can access information, products and services to help create your wellness-based lifestyle. This site deals primarily in natural health, wellness, self-care and alternative medicine.
Personal Services
Look Good…Feel Better www.lookgoodfeelbetter.org
A free, national public service program dedicated to teaching women cancer patients’ beauty techniques to help restore their appearance and self-image during cancer treatment.
Transportation
Corporate Angel Network
914-328-1313 www.corpangelnetwork.org
Corporate Angel Network provides FREE air transportation for cancer patients traveling to and from recognized treatment centers in the U.S., without regard to their financial resources. Call or visit their website for details and eligibility criteria.
Resources for Caregivers
Caregiver Survival Resources www.caregiver.com
Information on the cancer survivor series books, organizations, resources, and internet links. Contains information about “Today’s Caregiver Magazine”.
National Family Caregivers Association
Toll Free: 800-896-3650 www.nfcacares.org
Provides research, education, support and respite care to caregivers of cancer patients.
Pain and Symptom Management
American Chronic Pain Association (ACPA) www.theacpa.org
The materials provided in this site are a primary resource for individuals seeking to improve the quality of their lives.
American Pain Foundation www.painfoundation.org
This site is an online resource for people with pain, their families, friends, caregivers and the general public. Their mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.
American Pain Society www.ampainsoc.org
The American Pain Society is a multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering.
National Lymphedema Network (NLN) www.lymphnet.org
The National Lymphedema Network (NLN) is a non-profit organization that provides education and guidance to lymphedema patients, healthcare professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema.
Pharmacy and Drugs
FDA Cancer Liaison Program www.fda.gov
(Then type cancer in their search section)
Provides information and help to cancer patients and cancer patient advocacy programs about the FDA drug approval process, cancer clinical trials and access to investigational therapies.
Partnership for Prescription Assistance
Toll Free: 888-477-2669 www.pparx.org
This site helps locate assistance programs from pharmaceutical companies, as well as state programs.
Hospice and Palliative Care
Advanced Cancer – Living each day www.cancer.gov
(Go to NCI Publications, search for Publications, then type in “Advanced Cancer” in the search section.)
This online booklet was written to help people who are struggling with advanced or end-stage cancer.
Caring Connections www.caringinfo.org
Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life.
Growth House www.GrowthHouse.org
This website provides resources for life-threatening illness and end-of-life care. Its primary mission is to improve quality of life for patients through public education and global professional collaboration.
National Association for Home Care
and Hospice (NAHC) www.nahc.org
NAHC is an organization dedicated to making home care and hospice provider’s lives easier.
National Hospice Foundation www.nationalhospicefoundation.org
The National Hospice Foundation is committed to leading global, philanthropic efforts advancing quality, compassionate, end-of-life care for all.
Grief and Bereavement
AARP’s Coping with Grief
and Loss Website www.aarp.org
(Search for Grief and Loss)
Information from the American Association of Retired Persons on grief, common reactions and coping strategies.
The Association for Death Education
and Counseling www.adec.org
The Association for Death Education and Counseling is a multi-disciplinary professional organization dedicated to promoting excellence in death education, bereavement counseling and care of the dying.
Helpguide www.helpguide.org
(Go to Grief and Loss Section)
Helpguide’s mission is to empower people to understand, prevent and resolve health challenges.
GROWW www.groww.org
GROWW, Grief Recovery Online, is a not-for-profit internet community for anyone who has lost, or is losing, a loved one.
CONCLUSION
The information contained in this Guide is for general informational purposes only and should not be construed as legal, accounting, tax or financial planning advice. Because this information is not meant to be a substitute for legal, accounting, tax, financial, estate planning, or other similar advice obtained from a professional, you may want to seek the help of professional advisors to answer any questions you may have regarding the information contained in this Guide or as otherwise noted in the Guide.
For additional copies of this Guide, call toll-free 866-459-1271. There is no charge for the Guide, and it is distributed as a service to the cancer community by Fifth Season Financial Corp.
© 2008 Fifth Season Financial Corp. Fifth Season, Fifth Season Financial Corp, Fifth Season Financial Corp (stylized), Funding the Fight of Your Life and LILOC are registered trademarks of Fifth Season Financial Corp.
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