Due to the demands of treatment or coping with side effects, a brain tumor diagnosis can cause significant financial stress. Since the patient and/or primary caregiver may need to give up their job, there is often a loss of income. The medical social workers at your treatment center are not only there to provide support, but can often assist you with your financial concerns. They are an important resource and may know of local and national organizations that can provide financial support. The Brain Tumor Society does not provide direct financial assistance, but our social worker can connect you with the appropriate agency. The following organizations may offer some type of financial support:    

Adam Bullen Memorial Foundation
Oxford, MA
508.987.5999
www.adambullen.com

This foundation was established in memory of Adam Bullen. They provide emotional and financial support to children and adults coping with a cancer diagnosis in Massachusetts.


Air Care Alliance
Tulsa, OK
888.260.9707
918.745.0384
www.aircareall.org

This is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. Their website has an extensive central listing of free air transportation services that provide transport for patients, and sometimes family members, needing to get to a treatment center.

American Cancer Society
800.ACS.2345
www.cancer.org

This is a national organization that offers a variety of support services to patients and families coping with cancer. Some local offices may offer reimbursement for expenses related to cancer treatment, such as transportation, medicine, and medical supplies. 

Cancer Care, INC.
New York, NY
800.813.HOPE (4673)
212.302.2400
www.cancercare.org

This is one of the largest agencies solely dedicated to providing support to cancer patients and their families throughout the country.  They provide professional social work support free of charge, and based on need, financial assistance for transportation, home health care, and childcare.

CFA provides financial assistance to the medically indigent cancer patient anywhere in the United States. Since they are strictly funded by donations, they can only provide financial aid when funds are available. Call for an application and please note that a physician must certify diagnosis and financial need.  

Candlelighters Childhood Cancer Foundation (CCCF)
Kensington, MD
800.366.CCCF (2223)
www.candlelighters.org

CCCF is a national non-profit membership organization whose mission is to educate, support, serve, and advocate for families of children with cancer and survivors of childhood cancer. 

This foundation fulfills special wishes of children under the age of 18 who have a life-threatening illness.

Corporate Angel Network, Inc
White Plains, NY
866.328.1313
914.328.1313
www.corpangelnetwork.org

This is a charitable organization in the USA whose sole mission is to ease the emotional stress, physical discomfort and financial burden of travel for cancer patients by arranging free flights to treatment centers, using the empty seats on corporate aircraft.  Eligibility is not based on financial need and patients may travel as often as necessary.

Hospitality Homes
Boston, MA
617.482.4338
www.hosp.org

A network of private homeowners who offer rooms to patients and families visiting the Boston area for medical care. There is no cost to visiting patients.

The Michael Quinlan Brain Cancer Foundation
Louisville, KY
502.456.0711
www.mikequinlanbraincancerfound.org

Provides counseling services, a support group and financial assistance (for Kentucky residents only).

Tim and Tom Gullikson Foundation
Chicago, IL
888.GULLIKSON
www.gulliksonfoundation.org

This foundation was established in memory of Tim Gullikson. They assist brain tumor patients and their families in managing the physical, emotional and social challenges presented by the illness. They also have college scholarship program for individuals affected by a brain tumor diagnosis.


Make-A-Wish Foundation
Phoenix, AZ
800.722.WISH (9474)
602.279.WISH (9474)
www.wish.org

This foundation grants the wishes of children, under the age of 18, with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

National Association of Hospitality Houses, Inc
Asheville, NC
800.542.9730
www.nahhh.org

This is a non-profit corporation serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies. Each facility assures that a homelike environment is provided to persons who must travel to be with a patient or to receive necessary outpatient care.


National Children’s Cancer Society
St. Louis, MO
800.532.6459
www.children-cancer.com

N.C.C.S. is a non-profit organization whose mission is to provide direct financial support to children with cancer and their families, for expenses related to cancer treatment. They assist children from birth to age 18 and their families throughout the United States.


National Patient Air Transportation Hotline
Virginia Beach, VA
800.296.1217
www.npath.org

This hotline provides information about all forms of charitable, long-distance medical air transportation and provides referrals to appropriate sources of help available in the national charitable medical air transportation network.


Needy Meds
215.625.9609
www.needymeds.com

Needy Meds provides information about patient assistance programs and other programs designed to help those who can't afford their medicines.  Please note that this is not a program – it is only an information source.  If a particular drug has been prescribed for you, it may be worth checking the pharmaceutical company that produces that drug regarding their patient assistance program. 


Social Security
800.772.1213
www.socialsecurity.gov

This is the official website for the Social Security Administration.  Please call or visit their site for information on Social Security benefits and how to apply.


Sunshine Foundation
Feasterville, PA
215.396.4770
www.sunshinefoundation.org

Sunshine's sole purpose is to answer the dreams of ill children, from the age of 3-21 years old, whose families cannot fulfill their requests due to the financial strain caused by the child’s illness.


United Way
800.411.UWAY (8929)
www.unitedway.org

United Way may know of local charities and philanthropic organizations that can provide financial assistance.  Call them or visit their website to locate your local United Way.


Yellow Pages
www.yellowpages.com

Look in your local Yellow Pages under “Charitable Organizations”, “Human Service Organizations”, and “Social Service Organizations.”  Visit their website for more information about agencies in your geographical area.


Health Insurance and Disability Coverage

If you are unable to work due to your brain tumor, you may be eligible for benefit programs, either on a temporary or permanent basis.  The medical social worker at your treatment center can be a great resource in terms of assessing your eligibility for different programs and assisting you with the applications.  The social worker at the Brain Tumor Society is also available to answer any questions about insurance or disability coverage and can be reached at 800.770.8287 or support@tbts.org.

Health Insurance Rights and Protections:

For information on how to handle disputes with your health insurance company, or to review the consumer guidelines for your state, visit www.healthinsuranceinformation.net.  Thanks to a grant from the Robert Wood Johnson Foundation, the Georgetown University Health Policy Institute has written A Consumer Guide for Getting and Keeping Health Insurance for each state and the District of Columbia.  These Consumer Guides are available on their web site and are updated in accordance with changes in federal and state policy.  

The Patient Advocate Foundation (www.patientadvocate.org or 866.512.3861) 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 retention, and/or debt crisis matters relative to their diagnosis.  Professional case managers and attorneys specializing in mediation, negotiation, and education advocate on behalf of patients facing issues around access to care.  They provide assistance with the insurance appeals process, access to medications, and expediting applications for Social Security Disability, Medicare, Medicaid, and other social programs.

There are currently no laws in the United States that guarantee health insurance coverage. The two federal laws that provide some protection in keeping your health insurance are outlined below:


1. COBRA

Congress passed the Consolidated Omnibus Budget Reconciliation Act (COBRA) in 1986.  If you have a “qualifying event”, such as losing your job or changing jobs, you may be eligible for temporary health coverage benefits under COBRA. Since employers often pay a part of the premium for active employees and COBRA participants generally pay the entire premium themselves, group health coverage under COBRA is usually more expensive. While COBRA rates may seem high, the group premium rates for health insurance are often lower than the individual rates. To be eligible for COBRA, you must have been enrolled in your employer’s health plan when you were working. For more details about COBRA coverage and frequently asked questions, visit the website of the US Department of Labor at http://www.dol.gov/ebsa/faqs/faq_consumer_cobra.html.

In summary, COBRA:

-Requires employers with 20 or more employees on more than 50% of its business days for the past calendar year to comply with COBRA.

-Allows 18-36 months of health insurance coverage depending on the qualifying event.

-Requires that the premium not exceed 102% of the cost of the plan for active employees.  Beneficiaries often have to pay the portion of the premium paid as an active employee and the amount of contribution made by the employer, and in addition, there may be a 2% administrative fee.

-Requires that qualified beneficiaries be offered coverage identical to that available to beneficiaries who are not receiving COBRA coverage under the plan.  This is generally the same coverage that the qualified beneficiary had immediately before qualifying for COBRA. 

2. HIPAA

The Health Insurance Portability and Accountability Act (HIPAA) of 1996, also known as the Kennedy-Kassebaum Act, provides protections both for health coverage offered in connection with employment, such as group health plans, and for individual insurance policies sold by insurance companies.  For more details about your rights under HIPAA and frequently asked questions, visit the website of the US Department of Labor at http://www.dol.gov/ebsa/faqs/faq_consumer_hipaa.html.

HIPAA includes the following protections for coverage under group health plans that:

-Limit exclusions for pre-existing conditions
-Prohibit discrimination against employees and dependents based on their health status
-Allow a special opportunity to enroll in a new plan to individuals in certain circumstances. 

If you apply for an individual policy for yourself or your family, HIPAA includes protections that:

-Guarantee access to individual policies for people who qualify.
-Guarantee renewability of individual policies.

Health Insurance Coverage

If you do not have health insurance or can’t afford your medications, it is worth checking with pharmaceutical companies regarding their financial assistance programs for patients. Needy Meds provides information about most patient assistance programs and other programs designed to help those who can’t afford their medicines. More information can be found on their website at www.needymeds.com or at 215.625.9609.  Please note that this is only an information source – it is not a funding program.

There are various health insurance programs funded by the government: 

Medicaid

Medicaid is a federally and state funded health insurance program that provides medical assistance for certain individuals with low incomes and a disability.  Medicaid eligibility is limited to individuals who fall into specific categories. Although the Federal government establishes general guidelines for the program, the Medicaid program requirements are actually established by each state. Consequently, a person’s eligibility can depend on the state where he or she lives.  Individual states also determine which services are covered under their Medicaid program.  To apply for Medicaid, go to the local Department of Social Services or Department of Welfare.  More detailed information, along with state guidelines, can be found on www.cms.gov/medicaid.

Medicare is a health insurance program that is federally funded and administered by the Center for Medicare and Medicaid Services (CMS).  Currently, Medicare provides coverage to approximately 40 million Americans. You qualify for Medicare if:

1. At any age, if you have kidney failure or are legally blind.
2. You are disabled and have received Social Security benefits (SSDI) for 24 months
3. You are 65 years or older

CMS contracts with local health insurance providers to administer Medicare benefits at the local level.  There are two components of the Medicare program: Part A and Part B. There is no premium for Part A, which includes coverage for inpatient hospital care, inpatient care at a skilled nursing facility, home health care, and hospice care.  There is a monthly premium for Part B benefits, which includes coverage for physician services, durable medical equipment, and outpatient services and supplies. Please note that there are deductibles and co-pays for both Part A and Part B. More detailed information about Medicare benefits and eligibility guidelines can be found at www.cms.gov/medicare.

This program is administered by the Department of Health and Human Services. Hospitals receive Federal funds for construction or modernization under the Hill-Burton Program, and in return, these facilities provide a specific amount of free or below cost health care services to eligible people.  Eligibility standards vary between facilities based on income and family size, but the program provides free or low-cost medical care to people with low-incomes.  Contact the program for a list of participating facilities, as well as information on eligibility, at their toll-free hotline 800.638.0742 or http://www.hrsa.gov/osp/dfcr/about/aboutdiv.htm.

Disability Coverage

If you are unable to work due to illness, your first step should be to check with your human resources department about whether you are eligible for short and/or long-term disability through your employer. You should also look into what other disability coverage you may have; for example, if you have mortgage insurance, this might go into effect when you become disabled or unable to work.   

The Social Security Administration pays disability benefits under two programs: the Social Security disability insurance (SSDI) program and the Supplemental Security Income (SSI) program.  For a detailed outline of the eligibility requirements for both programs, locations of local Social Security offices, and on-line applications for SSDI, visit their website at www.socialsecurity.gov.

SSDI

Eligibility for SSDI is based on your work history and disability. To qualify for SSDI benefits, you must have worked in jobs in which you paid Social Security taxes and have a medical condition that meets their definition of disability.  Social Security has a strict definition of disability that can differ from other programs. They only pay for total disability; consequently, no benefits are paid for partial disability or for short-term disability. Under Social Security, you are considered disabled if you cannot do work that you did before and they decide that you cannot adjust to other work because of your medical condition(s). Your disability must also last or be expected to last for at least one year or to result in death.

In general, Social Security pays monthly cash benefits. These payments usually continue until you are able to work again on a regular basis. If you are receiving Social Security disability benefits when you reach age 65, your disability benefits automatically convert to retirement benefits, but the amount remains the same.

SSI

The Social Security Administration pays monthly SSI benefits to people with limited or no income who are disabled, blind, or age 65 or older. Unlike SSDI, these benefits are based on your income disability, and not on your prior work history. The medical standards for disability are almost the same in both programs. 

SSI is financed by general funds of the U.S Treasury through personal income taxes, corporation taxes, and other taxes. In most States, SSI beneficiaries also can get Medicaid (medical assistance) to pay for hospital stays, doctor bills, prescription drugs, and other health costs. SSI beneficiaries may also be eligible for food stamps in every State except California. In some states, an application for SSI benefits also serves as an application for food assistance.  SSI benefits are paid on the first of the month for the entire month.