Childhood Cancer

Job discrimination can spell economic catastrophe for cancer survivors because most health insurance is obtained through one’s place of employment. As survivors mature, seek employment, and move away from home, many encounter barriers to obtaining health insurance, such as rejection of application based on cancer history, policy reductions, policy cancellation, preexisting condition exclusions, increased premiums, or extended waiting periods.

The Patient Protection and Affordable Care Act (ACA) of 2010 and its companion amendments allow access to healthcare for survivors, who in the past could often not get healthcare due to preexisting conditions. You can find up-to-date information about the law at

The ACA offers the following provisions that are relevant to childhood cancer survivors:

  • Young adults are allowed to stay on their parents’ insurance plan until they turn 26 years old, whether or not they are in college.
  • Certain preventive services are covered, including services that are important aspects of survivorship care.
  • If a survivor is unemployed or has a limited income— up to about $15,000 per year for a single person—he may be eligible for health coverage through Medicaid.
  • If an employer doesn’t provide health insurance, survivors can buy it through the Health Insurance Marketplace (sometimes called an “exchange”), which offers a choice of health plans. To learn about the options in your state, visit
  • You may get tax credits to help pay for insurance if your income is less than about $43,000 for a single individual and your job doesn’t offer affordable coverage.
  • Health plans can no longer limit or deny coverage to anyone with a pre-existing condition.

Following are some legal remedies for insurance discrimination.

  • COBRA. The Comprehensive Omnibus Budget Reconciliation Act (COBRA) is a federal law that requires public and private companies employing more than 20 workers to provide continuation of group coverage to employees if they quit, are fired, or work reduced hours. Coverage must extend to surviving, divorced, or separated spouses, and to dependent children. You must pay for your continued coverage, but it must not exceed by more than 2 percent the rate set for the company’s full-time employees. By being allowed to purchase continued coverage, you have time to seek other long-term coverage. The U.S. Department of Labor provides a COBRA fact sheet at
  • ERISA. The Employee Retirement and Income Security Act (ERISA) is a federal law that protects workers from being fired because of the cancer history of the employee or beneficiaries (spouse and children). ERISA also prohibits employers from encouraging a person with a cancer history to retire as a “disabled” employee. ERISA does not apply to job discrimination (denial of new job due to cancer history), discrimination that does not affect benefits, or to employees whose compensation does not include benefits.
  • Health Insurance Portability and Accountability Act of 1996 (HIPAA). This law allows individuals to change employers without losing coverage, if they have been insured for at least 12 months. It prevents group health plans from denying coverage based on medical history, genetic information, or claims history, although insurers can still exclude those with specific diseases or conditions. It also increases portability if you change from a group to an individual plan. For additional information, a HIPAA fact sheet with frequently asked questions is available by visiting

Appendix B, Resource Organizations, lists organizations that can help if you or your child faces job discrimination or problems with insurance due to treatment for cancer.


Well, we finally did it. We took a deep breath, a heavy sigh, and we packed up the medical supplies. While this step may seem insignificant for some, those who have dealt with a chronic/life-threatening illness in their family know that the disposal of your arsenal of medical supplies is a symbolic rite of passage. It can only mean two things: your loved one has passed on, or you simply don’t need them anymore. We thank God every day that we ended up with the latter reason.

Katy’s medical “tower” was stored in our hallway, and included various bins and drawers full of central line supplies, a mini IV pump, masks and gloves, hypodermics, and sharps containers. It was very conspicuous. You simply couldn’t miss it if you walked through the house. It was our constant reminder that we had a sick child, and at times, for me, a crutch. I think I felt that as long as the tower was there and properly stocked and arranged, I was somehow in control of Katy’s illness. I feared disposing of, or putting anything away, thinking that if I did, she would most assuredly relapse and I’d need it again. No, of course that’s not rational, but rationality has never been one of my strong points.

However, as the months passed, the tower gathered its dust, and soon, I couldn’t remember the last time we’d even used any of the supplies. A few more months passed, and I began to realize what an eyesore this bunch of junk was! So, after my husband brought some big boxes home from work, it was time. We did it together. Into the boxes went the tubing and syringes, the masks and dressing change kits for the kids’ oncology camp. Into the garbage went all the expired meds, heparin, and saline. It was so liberating! I can’t imagine why we kept that stuff around for so long. It felt like the end of an era. And in a way it was.