Childhood Cancer

Childhood Brain and Spinal Cord Tumors

Sources of financial assistance

Sources of financial assistance vary from state to state and town to town. To begin tracking down possible sources, 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, don’t 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 underinsured. Be proactive and talk to the hospital about setting up a monthly payment plan.

Supplemental Security Income (SSI)

We flew to a pediatric neuro-oncology center this time around (it was Michael’s second craniotomy) and they did the surgery and the resection went great. It wasn’t as expensive an undertaking as you would think. We used the Corporate Angel Network to get plane tickets. No free flight they had would work for us, but we got the cheapest rate available. The hospital provided us with the flight company information and also a list of hotels in the area that provided rooms at a reduced medical rate. We stayed at a hotel for $69 a night (there were cheaper ones) and this place included free van service to take us to the clinics, the hospital, the local mall, and restaurants. While Michael was in the hospital, we ate in the cafeteria with our parent discount. Altogether, our costs were under $2,000 (there were three of us and we stayed in the area 7 days). Michael checked into the hospital the day before surgery to be started on steroids, had surgery first thing the next morning, left the hospital 3 days later, hung out at the hotel until our follow-up visit 2 days after that (at the follow-up, stitches were removed and we were cleared to head home). It was probably the best $2,000 I will spend this year. We kicked tumor butt!

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 blind or 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 monthly aid if the family income and assets are low enough. To find out whether your child qualifies for SSI, contact your nearest field office.

In addition, 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). NOSSCR can refer you to a member in your geographic location. You can contact NOSSCR by phone at (800) 431-2804, or online at


Medicaid is administered by state governments in the United States, with the federal government providing 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. Call your local or county social service department to obtain the number for the Medicaid office in your area. If they tell you your child is ineligible, ask if the state has an “Aged, Blind, Disabled, Medically Needy” program.

Medicaid sometimes also pays transportation and prescription costs. Some states cover children under the age of 21 if they are hospitalized for more than 30 days, regardless of parental income. States are supposed to have Children’s Medical Services programs to pay for medical treatment of physically disabled children; these programs allow a higher income level than Medicaid. Ask for a detailed list of benefits available in your state.

Free medicine programs

Children with cancer often need expensive medications, and they sometimes 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 to your child. For expensive medications, the income cut-off is high, so it is worth investigating whether or not 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 do not 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 3 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 other medications at their own expense. For those without private insurance, this usually creates an extreme 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. You can get more information about the specific programs in your state from your medical team or hospital social worker, or by calling your state’s department that regulates insurance (e.g., State Insurance Commission).

Service organizations

In Michigan, 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: Jake’s co-pays and prescriptions, trips back and forth to the hospital, doctor appointment and prescription co-pays for my husband and me, 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.

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 organizations that may exist in your community are: American Legion; Elks Club; fraternal organizations such as the Masons, Jaycees, Kiwanis Club, Knights of Columbus, Lions, and Rotary; United Way; Veterans of Foreign Wars; 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 fund raising

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 fund raising, and great care must be exercised to protect the sick child’s privacy to the fullest extent possible. Because there have been some unfortunate scams in which generous people were bilked out of contributions 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 eligibility, funds must be held in a special needs trust and paid directly to providers. If the family receives the money, 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.

Miscellaneous insurance issues

Loss of insurance coverage is every parent’s worst nightmare. If you lose your job, change jobs, or move while your child is on treatment, speak to your employer’s benefits manager promptly. You can continue insurance coverage with your previous employer through the Consolidated Omnibus Budget Reconciliation Act (COBRA) plan until you are certain your new insurance coverage is in effect or you can look for coverage under the Affordable Care Act (ACA). Although using COBRA may impose some financial strain on your family for several months, it will ensure your child’s coverage without interruption.

We just switched to an ACA plan from COBRA, as did a friend of mine with cancer. I am saving $300 per month and she is saving $400. ACA covers preexisting conditions, and you can get a special tax credit that is not available with COBRA if your income level is within certain limits.

Speak to your employer about whether participation in a Section 125 Plan (sometimes called a cafeteria plan, flexible spending account, or health savings account) is an option at your place of employment. These plans generally allow you to have your employer withhold pre-tax dollars from your pay for expenses such as childcare costs and non-reimbursed medical expenses. However, you often need to fill out reimbursement forms and submit them by year’s end, or the money is lost.


We had excellent insurance coverage, so we never experienced any major financial difficulties during my son’s treatment. However, insurance company literature can be so complicated that I felt I almost needed an advanced degree in rocket science to decipher our coverage. Our hospital has a financial counselor available for families that need help. Given the enormous stress that parents are under, I think it’s an invaluable service.