During a seminar at the 2013 United States Conference on AIDS, Ryan Clary presented information about how the lessons learned from HIV advocacy translate into viral hepatitis advocacy. Clary is Director of Policy and Programs at the National Viral Hepatitis Roundtable
, a coalition of about 200 organizations across the country fighting on behalf of people with hepatitis B and C.
Around five million Americans have hepatitis B or C. “The really scary part is that up to 70 percent of these people don’t know they have it,” said Clary. Since the disease often isn’t accompanied by any symptoms early on, many people present with symptoms of very late stage liver cancer. More than 15,000 people die of hepatitis B or C in the US every year.
Clary explained that the demographics behind hepatitis C are important, since 75% of cases are found in people born between 1945 and 1965 (ie, the Baby Boomers). African Americans, Asians, Latinos, people with HIV, veterans, prisoners, and homeless people are also affected in greater numbers. Of people with HIV in the US, about 25% are also affected with hepatitis C, and about 10% are infected with hepatitis B. This is one of the main reasons liver failure is a major cause of death in people with HIV.
According to Cleary, there are many similarities between the challenges faced by people who have HIV and those who have viral hepatitis. Both groups face social stigma, and may or may not know their status, and the disease disproportionately affects similar communities. Many services and clinics have begun integrating HIV and hepatitis treatment.
“The story for hepatitis C testing has completely changed… it’s a great story about advocacy and knowing the process,” Clary said. He explained that until this year, the US Preventative Services Task Force (USPSTF), which establishes clinical guidelines for US physicians, gave no recommendations for testing anyone with hepatitis C. In June of this year, the recommendation upgraded to a “B” grade, with recommended testing for anyone born between 1945 and 1965 or anyone with other risk factors, like a history of IV drug use, receiving a transfusion before 1992, or having a tattoo.
As a result of this upgrade and the Affordable Care Act, HCV testing for these groups will now be covered by non-grandfathered private insurance plans, by expanded Medicaid, and by traditional Medicaid in states that accept financial incentives. Medicare is also now in the process of deciding whether it will also provide services for these individuals, potentially expanding the pool even more.
Some gaps will still exist even with this expanded coverage for testing. Grandfathered private insurance plans may still not cover the testing, as well as traditional Medicaid in states that opt not to expand their services as part of ongoing changes due to the Affordable Care Act. Many Americans will also still remain uninsured.
Other challenges remain as well. As Clary explained, “In the hepatitis world there is not a lot of money, which is also a big issue.” The lack of awareness about hepatitis, even among health care providers, also remains a major challenge, in spite of the recent publicity with the change in guidelines.
Clary said that he hopes the USPSTF will also soon upgrade its recommendations for hepatitis B (which it currently recommends against, except in pregnant women). This results in further lack of awareness and lack of reimbursement for at-risk populations, like Asian Americans and foreign-born individuals. Currently, the National Viral Hepatitis Roundtable is weighing in to try to get this recommendation upgraded in some populations. “It’s really important to be patient, even when you hate these processes,” Clary concluded.