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Cancer Patients: Falling Through the Cracks of a Broken Healthcare System

Posted Jun 24 2009 1:43pm

Imagine being a child with a fast-growing form of leukemia.  You have endured chemotherapy, a bone marrow transplant, IV medications and 23 different pills per day.  Due to the side effects of the powerful drug cocktails you take, you have heart problems, a compromised immune system, steroid-induced diabetes, and short-term memory loss.  Life hasn’t been easy the past 2 years, but there is cause to be happy because your cancer is finally in remission.

But now, new storm clouds are gathering on the horizon because you have nearly reached the lifetime limit of coverage on your family’s health insurance plan.  Doctors have already let your parents know that there is not enough money left to pay for additional surgeries or specialized treatments that will be needed.

Your parents must either find other financial resources to help pay for treatments or you’ll have to do without them.

This is not a fictitious scenario, nor is it an isolated case.  It’s the heart-wrenching story of 10-year-old Taylor Wilhite and at least 1 million other cancer patients who have depleted their insurance coverage and now must beg, borrow or go bankrupt to continue life-saving medical treatments.

Taylor’s story is one of many highlighted in a report 1 from the Kaiser Family Foundation and the American Cancer Society that describe the stark reality that seriously ill cancer patients face when dealing with the astronomical costs of cancer care versus the lifetime benefits of most health insurance policies.

In Taylor’s case, the original health insurance benefit provided $1 million in coverage.  When that was depleted, the insurance company relented and covered Taylor for another $500,000.  But now, that is almost gone and Taylor will soon need more treatments.

Once insurance benefits are depleted, cancer survivors may discover that it is nearly impossible to find another insurance plan that will cover them.  Even high-risk insurance pools don’t take all cancer patients, and the ones that do often have premiums that are so high, they are virtually unaffordable to most people.  The New Hampshire high risk insurance pool costs one cancer survivor $13,000 per year in premiums, 2 a sum that would be out of reach for most people.

So what can cancer survivors do if they find themselves out of health insurance and in need of medical care?

One option that is becoming increasingly popular is to hire a patient’s advocate.  An advocate is typically a healthcare professional who knows how to navigate through the maze of treatment options, insurance documents, and hospital bills.  If necessary, they even negotiate fees and services with healthcare providers, insurance companies and Medicare.  Their job is to “protect and enhance patients’ rights and become agents of change in the healthcare system.” 3

There are two types of advocate services that work solely for the patient: for-profit and non-profit.  For-profit advocates are usually self-employed or work for an agency that provides services for a fee.  Along with the services mentioned above, they can often advise patients on low cost healthcare services, how to apply for a discount on prescription medications, and financial assistance programs that are available through local charities and government agencies.

Non-profit patient advocate services can also provide a wealth of resources on government-funded experimental treatments, how to appeal if you’ve been denied treatment by your insurer, and how to apply for Medicaid if your insurance has run out.

The non-profit Patient Advocate Foundation ( ) will even represent a patient in matters involving job retention, outstanding debts, and insurance problems related to their diagnosis.  Along with patient advocates, PAF employs physicians and attorneys that also work to resolve these issues.

As for Taylor Wilhite, she is one of the lucky ones.  She will become eligible for HIPAA benefits when her current health care coverage ceases — although the additional financial burden will stretch the family’s budget to the limit.

The challenges of living with a cancer diagnosis are daunting, and when you are at the end of your financial rope, they can be overwhelming.

If you find yourself in this situation, don’t struggle alone.  Log on to the PAF website and check out their free services or find a reputable patient advocate in your area.  When you’re fighting for your life, the only thing you need to be concerned about is YOU.


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