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Monday, August 30, 2010

Guaranteed coverage for patients in clinical trials

Colleen Haller

Staff Writer

Given the size and scope of the Affordable Care Act, learning about what it has to offer can sometimes feel like a daunting task. Amidst all the many benefits heading our way—the law eliminates pre-existing condition exclusions, allows young adults to stay on their parents’ plan, provides subsidies to help pay for coverage, requires insurance companies to spend more premium dollars directly on medical care, helps people appeal insurers’ decisions, etc.—it’s easy to miss some of the less high-profile, but equally important, protections included in the law.

One such protection is that insurers must continue to cover beneficiaries with cancer or other life-threatening conditions who enroll in clinical trials.

The Washington Post recently ran an article to tell the Crusoe’s story. Richard Crusoe was a retired firefighter from Pembroke Pines, Florida. When he was 57, he was diagnosed with a rare form of cancer called liposarcoma. The nature of his disease left little hope that conventional treatments would be successful. So when his family heard about a new and possibly ground-breaking drug being tested, some of their hope was restored.

Crusoe was approved to participate in the clinical trial, but was later disqualified because his health plan refused to cover his regular care during the trial. The issue, however, wasn’t the costs associated with the trial itself, which were already taken care of thanks to the cancer center—the issue was that his health plan refused to cover routine care, including regular doctor’s visits and his cancer treatment, during the trial. After getting help from the Patient Advocate Foundation, the Crusoes appealed the decision and eventually got the plan to cover $250,000 of care. Unfortunately, after weeks of fighting to get his coverage restored, Richard became too weak to participate and died a short time later.

The new law will help prevent situations like this from happening again. By 2014, all new health plans will be required to cover medical care for qualifying patients who enroll in clinical trials. That includes treatment for cancer and other life-threatening diseases, as well as treatment for side effects and other issues that might come up because of the trial.

It doesn’t seem fair that after paying his premiums every month, not to mention serving his community as a firefighter, Richard Crusoe’s coverage wasn’t there for him when he needed it. We can’t know whether the trial drug would’ve extended or even saved his life—but at least with the Affordable Care Act, in the future, patients with life-threatening illnesses will be able to find out if experimental drugs will work for them without worrying about losing their coverage.