The Cost of a Cure

Advances in medicine provide cures and life sustaining treatment for tens of thousands of Oregonians. But who decides which patients will receive them? Is the life of a private insurance patient worth more than someone the Oregon Health Plan?

OPINION -- Dr. Kris Alman raised the issues of drug prices and pharmaceutical profits in her recent guest opinion, Drug Prices Are Killing Americans and Making Fortunes for Pharmaceutical Executives (The Lund Report, August 6, 2014), last week. Dr. Alman chose to weigh in on the issue of the price of Sovaldi (sofosbuvir), the latest drug in the treatment, and cure, of viral hepatitis C (HCV). Sovaldi is made by Gilead Sciences, and has an average price of $84,000 for a full course of treatment.

As advocates for people living with HCV and other chronic health conditions, we are also deeply concerned about the cost of Sovaldi and all life-sustaining medications. The Fair Pricing Coalition, a group of local and national treatment activists who advocate for “fair and sustainable pricing of HIV and viral hepatitis drugs in the United States,” condemned Gilead for the price of Sovaldi in December of 2013. In fact, much of our own work has been to move the conversation about treatment beyond drug pricing and towards cost of treatment versus not treating.

Here are some facts about the numbers. State Medicaid programs immediately receive a 23.1% discount on the cost of drugs under Section 1927 of the Social Security Act, lowering the price to $64,680. Two federal agencies; the Veterans Administration and the Federal Bureau of Corrections, have been able to negotiate further reductions, a 44% cost reduction, which would lower the cost of treatment with Sovaldi to $36,900.

But what about the cost of doing nothing? Dr. Kent Brenner, the former Director of Hepatology at OHSU testified recently at the Oregon Health Evidence Review Commission’s Value based Benefits Subcommittee, that the percentage of cirrhosis increases in HCV patients over time, and that the estimated cost of this decomposition is $27-$40,000 per year.

Alman provides the example of the drug Gleevec as a comparative lesson to Sovaldi. Gleevec was approved by the Food and Drug Administration to treat Chronic Myeloid Leukemia (CML). CML is undeniably a serious medical condition, with approximately 6,000 new cases each year, and 800 deaths. By comparison, an estimated 5 million Americans are currently infected with HCV, with more than 17,000 people newly infected each year. HCV is the leading cause of liver cancer in the US, responsible for an estimated 80,000 deaths each year.

Here in Portland this is of special concern, as the use of cheap injectable heroin quickly becomes the drug of choice for a new generation of addicts following much needed crackdowns on abuse of opiate pain prescriptions.

Perhaps the most egregious comment of Alman’s piece was the line, “Remember the baby that was cured of HIV? Not!” As a doctor, Alman should have a basic understanding of immunology, including “perinatal” or “vertical transmission” of HIV. According to the Centers for Disease Control and Prevention (CDC), vertical transmission can be prevented in more than 98% of cases by following standard proven protocols, including the use of antiretroviral drugs. Because so many cases of vertical transmission occur outside of the US in the developing world, the possibility, however small, of being able to cure a child of HIV has an enormous implication on eliminating HIV transmission, a lifetime of antiretroviral drugs, and the future of global health.

Dr. Alman continues, providing the diagnosis of psychopathology for pharmaceutical executives and offering treatments including, “chemical-castration” and “oxytocin.” She also recommends heart transplants and deep brain stimulation.

Alman’s glib attitude toward the child with HIV and her proposed “treatments” for “psychopaths” makes me glad that she no longer practices medicine, as her empathy and bedside manner are questionable, at best. Her attempts at sarcasm, in our opinion, fail miserably, stigmatizing mental illness and ignoring the millions of Americans who depend on the life-sustaining and life-saving drugs available to remain healthy.

For people living with HCV, and other chronic health conditions, treatment access and cost are very real and difficult issues. Access to insurance, while crucial, does not guarantee access to affordable treatment as many of us are now realizing.

We will continue to engage in this conversation and welcome all stakeholders, at the state and federal level, especially patients to join us as we try to navigate healthcare access and treatment for all Oregonians.

BJ Cavnor is the founding Executive Director of One in Four Chronic Health, a collaborative providing access to treatment for people living chronic health conditions. He has been working on issues of healthcare policy including; patient rights, affordability and treatment access for more than two decades. Cavnor has been living with HIV for more than 18 years, which has helped to shape his work on behalf of all people living with, or impacted by, chronic health conditions.

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