The Federal Government needs to step up to help eliminate Viral Hepatitis.

As a patient advocate, I often find myself taking a yearly trip (or a few) in the spring to speak with lawmakers and their offices. I speak to a number of injustices. I say this because they’re a strange combination of factors from willful defiance of the law to intentional underfunding likely due to in part to stigma and in part because it wasn’t “actionable” until 2013. Actionable, in this case, refers to investing in something that can improve or have a result which is desired. In truth, the only treatment prior to 2013 was still a crapshoot with a 70% cure rate (this rate does not include dropouts). Prior to 2013, there was little reason for an elected official to care about Hepatitis C (HCV), as little could be done. But in 2013, when a new treatment could help the millions suffering from Hepatitis C, instead, states restricted access to the treatments because they were expensive. (In truth if every American with HCV were treated for HCV with those prices, the numbers would run in the trillions, as it was about 88k per treatment and HCV affects between 3-6 million Americans. But due to the structure of healthcare here and the fact that more than 50% of people with HCV in the U.S. are unaware of their status, that could never have actually happened.) But when the prices fell, some states maintained the restrictions, some even expanded them. In 2015, CMS(Centers for Medicare and Medicaid Services) stepped in and issued a memo ensuring that all state Medicaid offices should not have restrictions for HCV meds. Despite both the significant decline in cost of the medications and the mandate of the 2015 CMS reiteration, 11 states continue to use liver damage restrictions, 34 states along with D.C. and P.R. continue to use sobriety restrictions, and 27 states along with D.C. and P.R. continue to use prescriber restrictions on access to Hepatitis C medications. In Texas, a Hepatitis C patient must be permanently injured with cirrhosis before they can access treatment. These restrictions are illegal, yet they persist. If you want to see a great breakdown of just how bad this is.

The State of Hep C with Medicaid Access (courtesy of StateOfHepC.org)

 Something as simple as an additional memo from the White House to CMS, giving them the ability to enforce the coverage and encourage Managed Care Organizations (Insurance organizations but for Medicare/Medicaid) to remove the restrictions might help ensure access to Hep C medications in states like Texas. An uncharacteristic hyper-regulated health access policy stance possibly due to strategic ignorance under the belief that it is more thrifty to deny live-saving medications to their residents. If you live in Texas, Montana, South Dakota, Missouri, Nebraska, Iowa, Indiana, Alabama, or West Virginia, have Hep C and are in need of assistance, please check out Help4Hep, give ’em a call they’re a great group with helpful resources. Otherwise, maybe find your representative and tell them how absurd this is?

 The other matter also involves a certain ignorance; however, this one does not have the willful defiance fueling needless death. Hepatitis C has been chronically underfunded for decades. It currently is funded at 39 million at the federal level. That’s about 12 cents per person for the entire United States. For a condition which affects between 3-6 million Americans, and an additional 1.2-2.2 million with Hepatitis B, it is painfully surprising how little funding has gone into helping patients with viral hepatitis. I recently learned in preparation for a meeting with a house rep, that we lack significant analysis of viral hepatitis as federally, there is only one part-time epidemiologist for all of California’s nearly 40 million residents regarding viral hepatitis.

Virtual Hill Days have temporarily replace typical Hill visits

Right now, NVHRHep B Foundation, Hep B UnitedNASTAD, and others are hoping to expand the budget for viral hepatitis. The CDC has estimated that it would require an annual commitment of at least 316 million dollars to put the United States on the path towards viral Hepatitis Elimination. The current suggestion is to increase the budget to 134 million, less than half of what the CDC estimated is necessary. While personally, it’s disappointing to imagine a world where people disagree with public health priorities, we have positioned ourselves for modest but strategic gains in funding in this decreased ask. Because at 134 million, that’s still less than 50 cents per person in the United States.

This funding would expand one of the most critical elements of Viral hepatitis elimination, screening. In 2020, the CDC finally expanded screening recommendations to all adults and rescreening people who use injection drugs and during each pregnancy. While the latter has been met with some resistance from OBGYN groups, the other recommendations are slowly being implemented across insurance networks. (this is why OBGYN groups are misguided in their approach) This new recommendation is meaningless without expanded testing, especially in communities disproportionately affected by Viral Hepatitis. That testing is naturally limited by the current meager national funding. State and local efforts have a hard time gathering support without grassroots groups due to the silent stigma of Viral Hepatitis. Enhancing funding for screening in Federally Qualified Medical Centers and other community clinics would expand the reach of Hep C diagnosis into the heart of the #MissingMillions and start to help people where they are. But screening is only the door; it’s important that folks and doctors are ready to help guide and link patients with hepatitis c to treatment and ultimately cure/elimination.

2016 I joined with CalHep to help expand linkage-to-care.

In 2016, CalHep, formerly a program for Project Inform, now a part of the San Francisco Aids Foundation, led an effort to have several targeted linkage to care programs for Hep C in California. In total, the program was successfully funded for three years, with two million going into primarily three linkage-to-care or physician-education programs. It was very successful, but ultimately it would not be extended in 2018 due in part to Gov. Brown’s stance on long-term funding. This program’s total cost was roughly 6 million dollars. This is a familiar figure to me, as my bill to insurance total sits at a bit over 6 million dollars for all of my care as a Hep C patient since diagnosis. Efforts like CalHep are scattered throughout the country and have been empowered by local campaigns like End Hep C S.F. and Hep Free NYC. These grassroots groups are the backbone of Viral Hepatitis elimination in the U.S., and are in place ready to be empowered by increased funding. Groups like Hep Free Hawaii, like End Hep C San Diego, work as private-public partnerships with stakeholder groups. Most elimination campaigns are paired with or work with local Harm Reduction groups. This is a natural fit, as there is no way to eliminate hep c without addressing its most common transmission route, intravenous drug use. Harm Reduction groups add to the grassroots power of Hep C elimination. As folks at End Hep S.F. have seen, when people are cured of HCV, they accomplish secondary goals and may have an easier time controlling their substance use; it is an incredible state change being free of viral hepatitis, an otherwise death sentence. Grassroots organizations aren’t just here in the United States, NoHep is worldwide; as a program from the World Health Organization and World Hepatitis Alliance, it serves to connect and share data with micro-elimination movements around the world. This is our time to come together and end viral hepatitis. We have the tools: Vaccines for Hep A and B, and Curative treatments for Hep C; we have the people willing to do the work, now we need support.) 

 You can help. This year, Congress is poised to pass healthcare legislation that can improve the lives of millions of Americans. Allocating $134 million for the CDC Division of Viral Hepatitis and $120 million for the CDC Infectious Diseases Consequences of the Opioid Epidemic Program in Fiscal Year 2022 appropriations budget would bring us one ACTIONABLE step closer to Hep C elimination. In 2016 the USA joined in the WHO NoHep Pledge for global elimination of Viral Hepatitis by 2030, but it’s fallen short so far and taken years to take simple steps like universal screening for Hep C, while Hep B still needs universal screening recommendations from the CDC. This funding step would be the first real investment made by the United States’ federal government towards Viral Hepatitis elimination in the U.S. Let’s end Viral Hepatitis.


Unconvinced? Check out what Frank Hood has to say, he’s the Manager of Hepatitis Advocacy for The AIDS Institute and an all around great guy.

Get Tested, Get Treated, Get Cured.

PS it wouldn’t hurt if we fully got rid of the federal ban on funding Syringe Service Providers, it would provide a helpful destigmatizing avenue for people seeking treatment.

Senator Wiener Introduces Legislation to Establish a Master Plan to End the Epidemics of HIV, Hepatitis C and Other STDs

SB 859 would create a master plan requiring state agencies to set targets to end outbreaks of HIV, Hepatitis C, and other STDs

SACRAMENTO – Senator Scott Wiener (D- San Francisco) introduced a bill today that would require state agencies to establish and implement a master plan to end new infections of human immunodeficiency virus (HIV), hepatitis C virus (HCV), and other sexually transmitted diseases (STDs). The diseases disproportionately impact gay and bisexual men, African American men, and young people ages 15-24. Though many effective preventative and treatment tools exist today, these epidemics still persist. In a society where we have the ability to treat and prevent against new infections, it is unacceptable that the rates of infection have barely slowed, and have increased in communities of color.

From 2013-2017, new HIV diagnoses decreased 2% in the African American community and increased by 4% in the Latinx community, while declining nearly 13% among white people. And, comparatively, in New York, since the implementation of a master plan to end new HIV infections in 2014, diagnoses are down 40%. California’s preventative work is falling dramatically behind other states, and it is time to take a more thorough approach to ending these epidemics.

Senate Bill 859 would require the Secretary of California Health and Human Services (HHS), in coordination with the Chief of the Office of AIDS (OA), to create a comprehensive Master Plan to end new infections of HIV, HCV and other STDs. This bill mandates that the Secretary and Chief institute a Stakeholder Advisory Committee and work with relevant state agencies to set targets to end new infections and identify recommended programs, policies, strategies, and funding for achieving these targets. 

Senator Wiener, the bill’s author and longtime LGBTQ rights activist who was the first elected official in the United States to openly discuss his use of PrEP, a preventative HIV treatment, said the following:

“We have the tools to end new infections of HIV and STDs. What we’re missing is political will. This bill, SB 859, would require California to make a plan to end this epidemic, and help state agencies access the necessary resources to do so. I’m proud to be introducing another piece of legislation fighting for the LGBT community, which, alongside other marginalized communities, is disproportionately impacted by HIV and other STDs. California must be a leader on these issues, and right now we’re at risk of falling behind. SB 859 would a big step towards finally ending the epidemic.”

“We have come so far in how we can diagnose, treat, and in some cases cure these diseases. They no longer have to be epidemics,” said Assemblymember Todd Gloria (D-San Diego), principal co-author of the legislation. “It’s time for California to lead and demonstrate that ending the HIV, HCV, and STD epidemics is possible. Creating a master plan to bring focus and collaboration to end these diseases is in the best interest of public health, taxpayers, and our future generations.” 

“Creating a Master Plan on HIV, HCV, and STDs will address widening disparities among vulnerable populations and build upon the successes of the last 30 years,” said Assemblymember David Chiu (D-San Francisco).  “I am proud to join Senator Wiener’s effort to bring California’s efforts to end these epidemics in line with other states.”

“STD rates in California have reached record highs and HIV and hepatitis C continue to impact the state’s most vulnerable and underserved communities,” said Craig E. Thompson, CEO of APLA Health. “We applaud Senator Wiener for leading this bold effort to bring together state agencies and community members to develop an aggressive strategy to end these epidemics. Now we need the full support of the Governor and the Legislature. The longer they wait, the more it will cost California to treat new infections that could – and should – have been prevented in the first place.”

“California can no longer respond to its HIV, HCV, and STD epidemics as if they are distinct public health crises. These epidemics stem from the same root causes: lack of access to health care and prevention services, stigma and institutional bias, and an insufficient, fragmented response from our public health system,” said Joe Hollendoner, CEO of San Francisco AIDS Foundation. “We are thankful to Senator Wiener for his leadership in calling for a statewide masterplan to end the epidemics and look forward to working together toward a future of health justice for all Californians.”

“Collaborative and concrete action to address skyrocketing STD rates is long overdue,” said Julie Rabinovitz, President and CEO of Essential Access Health. “A public health crisis of this magnitude requires a comprehensive statewide strategy to strengthen our public health infrastructure, increase public awareness about the importance of STD prevention, and expand access to STD testing and treatment for all Californians. We thank Senator Wiener for his leadership in calling for the development of a coordinated state work plan to end the HIV, Hep C, and STD epidemics in our state, and look forward to advancing this important measure this session.”

“San Francisco has long been a global leader in working to end new HIV infections, and just last year new HIV infections dropped below 200 for the first time ever,” said San Francisco Mayor London N. Breed. “We are, however, facing some of the same challenges that we see statewide, including reaching our Black and Latino populations and reducing new infections for people who are experiencing homelessness. We need the State to develop a comprehensive plan that will help our City, our region, and our State end the epidemic once and for all, and I thank Senator Wiener for his leadership on this important issue.”

SB 859 is sponsored by the SF AIDS Foundation and APLA Health and co-sponsored by Essential Access Health. Assemblymembers Todd Gloria and David Chiu are principal co-authors. Additionally, Senator Melissa Hurtado (D- Fresno) and Assemblymember Rob Bonta (D-Oakland) and are co-authors of the bill.