Today, Harm Reduction Coalition and public health advocates around the U.S. are celebrating the demise of Senate Republicans’ attempts to repeal and replace the Affordable Care Act. It is fitting that the nail in the coffin for healthcare reform came in the first hours of today, World Hepatitis Day.
The Affordable Care Act has significantly expanded access to not only healthcare, but also mental healthcare and substance use treatment. The opportunities afforded to us by the Affordable Care Act will be essential to address the large number of hepatitis infections in the United States.
Even with the Affordable Care Act, there are significant barriers preventing any serious attempts to eliminate hepatitis in our country. Hepatitis C has an effective cure, but that cure is too costly for many to afford. There are a variety of different models for lowering the cost of hep C treatment, including using an obscure federal law (28 USC section 1498) to override pharmaceutical patents and provide the medication at low cost which is being pursued in Louisiana and to get a discount for bulk purchasing treatments as they are doing in Australia and in Brazil. Perhaps most intriguing is the proposal suggested in the recent report by the National Academy of Sciences, Engineering, and Medicine (NASEM).
Many studies have shown that hep C treatment is just as effective for people who use drugs as it is for people who do not use drugs.
In advance of May, National Hepatitis Awareness Month, NASEM released their Phase 2 report “A National Strategy for the Elimination of Hepatitis B and C”. There are many recommendations in this report that Harm Reduction Coalition supports, particularly the consistently repeated recommendation of expanding syringe access programs around the United States in order to prevent the transmission of hep C and connect people who inject drugs (PWID) to hep C testing and treatment. The pricing recommendations use a similar framework of 28 USC section 1498, but have developed a much more politically palatable way to approach the discussion. Rather than the federal government using its powers to acquire patents, NASEM suggests that a “voluntary transaction between the federal government and a patent holder, where in the companies producing direct-acting antivirals compete to license their patent to the federal government for us in neglected patients.”
The main differences between earlier suggestions for using the patent law to lower the prices of drugs and the NASEM recommendation is that rather than claiming the patent for all treatments NASEM recommends that the government would only negotiate the right to produce cures that go to populations that are covered by taxpayer funded programs such as Medicaid, Medicare, and people who are incarcerated. These populations are currently lacking access to treatment due to the high price, so the companies are not making significant profits on those treatments. The company that was willing to negotiate the best price with the government to license its treatment would get access to markets that have a significant disease burden and currently treatment uptake rates a very low. So, whichever company takes the deal would be able tap into otherwise inaccessible profits. This is a win/win solution, everyone living with hep C who receives their insurance through a government program will be able to access treatment, the government will save a significant amount of money long term, and the pharmaceutical company that wins the bid will make easy profits. This proposal also preserves the massive potential profits that can be made from treating people living with hep C who have private insurance.
However, even if the cost of hepatitis C treatment were to be substantially lowered and treatment access was universal there are still many other barriers to eliminating the virus. There are not nearly enough doctors prepared to treat people who are living with hep C which would create a bottle neck if treatment access was increased. We currently don’t have the surveillance and testing systems in place to identify people who are living with hepatitis, an essential first step to connect people to treatment. How can anyone make a plan to end hepatitis when there is no clear picture of how many people are living with the virus and where those people are located? There is still a large lack of awareness of the hep C virus and not nearly enough prevention services. Possibly the most significant barrier for initiating hep C treatment for people who use drugs is the stigma that people who use drugs face, particularly when accessing medical services. Some doctors require drug tests to assess people’s readiness for treatment. This is inappropriate as many studies have shown that hep C treatment is just as effective for people who use drugs as it is for people who do not use drugs.
Hepatitis C cannot be eliminated until we scale up prevention, surveillance, and treatment. We must address stigma so that all people regardless of their gender, their identity, their sexual orientation, geographic location, type of health insurance, and their choices about using substances are able to access a cure. Ending hepatitis will require political will and passionate activism—the same kind of activism that successfully resisted the dismantling of the Affordable Care Act. Now is the time to organize our movement.