Maybe you can’t fight city hall, but Terrance Kalley isn’t fighting city hall, he’s fighting the federal government. His wife, Arlene, has breast cancer. She relies on the late-stage cancer drug Avastin to survive. Insurance covers the cost of the drug despite its expense, which is significant. But if the Food and Drug Administration (FDA) rules the way it’s looking like it might, Kalley’s wife, and thousands of other women fighting breast cancer, could die. An FDA advisory panel has recommended delisting Avastin from official government formularies for late-stage breast cancer treatment due to cost concerns. If this happens, Avastin will no longer be covered by Medicare. And private insurance companies, which follow the government’s lead, would likely deny coverage for the drug. This would make this crucial drug available only to those with the means to afford its hefty price. But Kalley isn’t just sitting by while bureaucrats contemplate his wife’s fate; he’s taking action.
Terrance Kalley is not a rich man but he has dedicated his life to a single purpose — to fight the FDA. In fact, he has become the FDA’s worst nightmare — a knowledgeable and well-spoken advocate for cancer patients willing to speak up for what is right. He’s started an organization dedicated to ensuring the government doesn’t eliminate access to life-saving medicine — Freedom to Access to Medicines (FAMEDS), a group dedicated to speaking about the growing threat of rationing on behalf of patients.
From the FAMEDS website:
While the tragedy of access to critical medical needs extends to various medications and medical devices, FAMEDS has dedicated its initial efforts to fighting for women with metastatic breast cancer to keep their access to the drug Avastin. It has chosen to concentrate on Avastin because 40,000 women per year die of metastatic breast cancer (MBC).
Critical to the Avastin situation is that an estimated 17,500 women with MBC are about to lose their access to Avastin due to what FAMEDS believes is an incorrect and unscientific decision by the United States Food and Drug Administration. Unless this decision is reversed, or somehow these women can continue receiving their Avastin and not have their private medical insurance and Medicare coverage removed, many innocent women will die needlessly and prematurely.
You might think a group like FAMEDS would be run by a doctor or some experienced health policy expert or group but, in fact, Terrance Kalley is a small business owner from Detroit who took a leave of absence from his job to become an advocate for health care rights for all Americans. He is a testament to what one person can do in the face of incredible odds.
The FDA is holding a hearing on June 28th on whether or not to accept an advisory panel’s recommendation to delist Avastin, thus denying the drug to thousands of women who need it. Kalley is working tirelessly until then to apply as much pressure as possible on the FDA to reject the advisory panel’s recommendation.
Kalley said, “Denying Avastin to these woman is akin to denying someone food and water. It is inhumane and uncivilized. It’s completely un-American. A woman’s right to choose with her physician the best medical options for her went out the window. The most fundamental of rights, the right to one’s own life, was dismissed with contempt by the FDA. What happened to inalienable rights to life, liberty and the pursuit of happiness?”
With the government assuming more and more control over our nation’s health care system with the passage of Obamacare, the battle over Avastin is the front line in the battle for health care liberty. While cases challenging the constitutionality of the law working their way through the courts may stop the law from being fully implemented, there are real-world consequences in the meantime.
The government must control costs. The thousands of waivers granted thus far from the regulations being put in place now will only go so far in achieving that goal. More substantial steps will have to be taken. There are only two ways for government to control costs: price controls and rationing. Price controls essentially exist in Medicare, with the government telling doctors what they will pay for certain procedures, regardless of the actual cost of those procedures. This forces doctors to shift the cost of losses for some procedures to the private sector, which ends up adding to the rising cost of private health insurance. But the government won’t be able to control costs with price controls alone. If the government’s role in the health care sector increases, it will have to resort to rationing.
In the coming years, there will be many fights over rationing — the fight over Avastin is just the first. That’s why what Terrance Kalley is doing in the name of love is much larger than the fight of a husband for his wife; it’s a fight for all of us.
Derek Hunter is a Washington-based writer and consultant. He can be stalked on Twitter @derekahunter