Sources of financial assistance vary from state to state and town to town. To begin tracking down possible options, ask the hospital social worker for assistance. In addition, some hospitals have community outreach nurses or case workers who may point out potential sources of assistance.

Hospital policy

If you are unable to pay your hospital bills, do not sell your house or let your account go to collections. Ask the hospital social worker to set up an appointment for you with the appropriate person to discuss the hospital policy for financial assistance. Many hospitals write off a percentage of the cost of care if the patient is uninsured or under-insured. You can also talk to the hospital about setting up a monthly payment plan.

Supplemental Security Income (SSI)

SSI is an entitlement program of the U.S. government that is based on family income and administered by the Social Security Administration. Recipients must be disabled and have a low family income and few assets. Children with cancer qualify as disabled for this program, making some of them eligible for a monthly financial payment if the family income and assets are low enough. To learn more or to apply, visit www.ssa.gov/ssi.

Our Katie was approved for SSI right away. It did take a large amount of preparation with the required paperwork. I researched and when I found a roadblock, I asked the Social Security people what I needed to overcome these obstacles. In our case, we had too much money in the bank, so we “spent down” by prepaying bills. I made sure I had all our birth certificates, that Katie’s medical records were complete, etc. Since I found this so cumbersome, you can’t imagine how happy I was when our income and Katie’s health excluded us from SSI and we became self-sufficient again. That said, I sure was glad it was there when needed.

If you need legal help appealing a denial for SSI, there is a professional organization of attorneys and paralegals called the National Organization for Social Security Claimants’ Representatives (NOSSCR). You can contact NOSSCR by phone at (800) 431-2804 or online at www.nosscr.org for a referral to a member in your geographic location.

Medicaid

Medicaid is a program that pays for medical services needed by citizens with low incomes. Medicaid is administered by state governments, and the federal government pays a portion of the entitlement. Rules about eligibility vary, but families with private insurance sometimes are eligible if huge hospital bills are only partially covered by their insurance policy. Some states cover children younger than age 21 if they are hospitalized for more than 30 days, regardless of parental income. In addition to medical bills, Medicaid sometimes also pays for transportation and prescriptions. More information is available at www.medicaid.gov.

Free medicine programs

Children with cancer, and survivors of cancer, often need expensive medications, and sometimes families cannot afford them. Most major U.S. drug companies have patient-assistance programs, and you can apply to obtain free or low-cost prescription drugs. Although each company has its own criteria for qualification, in general, you must:

• Be a U.S. citizen or legal resident
• Have a prescription for the medication you are applying to get
• Have no prescription drug coverage for the medication
• Meet income requirements

You may qualify even if you have health insurance, if it does not cover the medication prescribed for your child. For expensive medications, the income cut-off may be high, so it is worth investigating whether you qualify. Several organizations that can help you find and apply to patient-assistance programs are listed in Appendix B, Resource Organizations. Because the application process takes time and includes obtaining information from your child’s doctor(s), plan ahead so you don’t run out of medication.

Our insurance does not cover the growth hormone that my daughter needs. Her physician cannot believe that our insurance company denied coverage for a survivor with a history of radiation to the brain and multiple late effects to the endocrine system, but that’s our situation. The medication is incredibly expensive. We applied to a patient-assistance program and were thrilled to find out that we qualified if our adjusted gross income was less than $100,000 a year. The application process the first year was hard and took a few months, but now we just fill in a form and send in our tax return every year, and she is requalified. We get a shipment of growth hormone every three months and keep it in the fridge.

Although the cost of in-hospital treatment in Canada is covered by provincial governments, families have to pay for some medications. For families without private insurance, this often creates financial hardship. In many instances, the Department of Social Services can help pay for medications. The qualifications vary in each province and the decision is based on financial need. Canadian parents should contact their provincial Department of Social Services for further information.

State-sponsored supplemental insurance

Most states have supplemental insurance programs for families with children who are living with chronic conditions. These programs often help cover services, prescriptions, and co-payments that your primary insurance will not pay for. You can get more information about the specific programs in your state from your hospital social worker or by calling your state’s department that regulates insurance (e.g., State Insurance Commission).

In our state, besides my husband’s insurance, we also have what is called Children’s Special Health Care Services (CSHCS). It is a secondary insurance that pays for what our primary insurance doesn’t—co-pays and prescriptions, trips back and forth to the hospital, doctor appointment and prescription co-pays, our stay at the Ronald McDonald House. Any expenses related to treatment that our primary insurance won’t cover, this will. The amount you pay for this coverage is based on family income. It has been a lifesaver for us.

Service organizations

Numerous service organizations help families in need, providing aid such as transportation, wigs, special wheelchairs, and food. Often, all a family has to do is describe its plight, and good Samaritans appear. Some service organizations in your community may be: American Legion; Elks Club; fraternal organizations such as the Masons, Jaycees, Kiwanis Club, Knights of Columbus, Lions, and Rotary; United Way; and religious groups of all denominations. In addition, local philanthropic organizations exist in many communities. To locate them, call your local health department, ask to speak with a social worker, and ask for help.

Organized fundraising

Many communities rally around a child with cancer by organizing a fundraiser. Help is given in various ways, ranging from donation jars in local stores to an organized drive using all the local media. There are many pitfalls to avoid in fundraising, and great care must be taken to protect the sick child’s privacy to the fullest extent possible. There have been some unfortunate scams in which generous people donated to funds for sick children who did not exist. If you decide to try fundraising, it is best to obtain legal assistance and to establish a trust fund for the express purpose of paying the child’s medical expenses.

If your child is on or seeking Social Security or Medicaid, funds must be held in a special needs trust and paid directly to providers. If the family receives money from fundraisers, or the child’s Social Security number is used to open the bank account, the child can lose funding from both Social Security and Medicaid.