Job discrimination can spell economic catastrophe for cancer survivors because most health insurance is obtained from 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. As current discussions about national healthcare reform are extremely contentious, it seems unlikely that major reforms of the American health insurance system will occur in the near future.
I realize that I must do whatever is necessary to stay covered on my parent's insurance as long as possible. I don't particularly like that, but it is important. As long as I remain a full-time student, it will be okay.
Most states offer high-risk individuals, like cancer survivors, access to comprehensive health insurance plans (CHIPS). CHIPS, also called "high-risk pools," are a means for individuals to obtain insurance regardless of their physical condition or medical history. For more information on CHIPS, call (877) 543-7669 (877-KIDS-NOW) or visit http://www.insurekidsnow.gov.
Although neither the states nor the federal government mandate a legal right to insurance, there are some legal remedies to insurance discrimination.
• COBRA. The Comprehensive Omnibus Budget Reconciliation Act (COBRA) is a federal law that requires public and private companies employing more than twenty 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 your former co-workers. By being allowed to purchase continued coverage, you have time to seek other long-term coverage. The US Department of Labor provides a COBRA fact sheet at http://www.dol.gov/dol/pwba/public/pubs/cobrafs.htm.
• 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. See the fact sheet at http://www. dol.gov/dol/pwba/public/pubs/erisafs.htm.
• Health Insurance Portability and Accountability Act of 1996. This law allows individuals to change to a new job without losing coverage, if they have been insured for at least twelve 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, visit http://www.hcfa.gov/medicaid/hipaa/ and http://www. dol.gov/dol/pwba/public/pubs/hipaafs.htm.
ERISA, COBRA, and parts of the Health Insurance Portability and Accountability Act of 1996 are enforced by the Pension and Welfare Benefits Administration of the US Department of Labor, (202) 219-8776.
For detailed information on the ADA, COBRA, ERISA, and the Health Insurance Portability and Accountability Act of 1996, read A Cancer Survivor's Almanac: Charting Your Journey, edited by Barbara Hoffman, JD.
Appendix C 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 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 David 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.
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