Hepatitis on the Hill

By: Emily Stets, Program and Policy Associate, National Viral Hepatitis Roundtable (NVHR)

Imagine a room filled with over a hundred people from around the country, all wearing name badges, mingling in small groups and with purple folders tucked under their arms. Purple shoulder bags emblazoned with Hepatitis on the Hill are scattered around the room, straps hanging off the backs of chairs, and many participants have donned little Hepatitis on the Hill pins on their lapels.

This type of event may not seem uncommon in HIV advocacy, where inspiring events like AIDSWatch constitute the nation’s largest constituent-based national HIV/AIDS advocacy event. However, such events have only just begun to take off for the viral hepatitis community, where the urgent need for national stakeholders to address the viral hepatitis pandemics has heightened in the past few years.

Hepatitis B and C are distinct blood-borne viruses transmitted through blood-to-blood contact. Left untreated, the viruses attack an individual’s liver, and represent the leading cause of liver cancer in the United States.[1] The CDC’s March 2016 Report to the Nation on the Status of Cancer indicated that while the rate of most cancers in the U.S. have declined, liver cancer has increased 2.3% between 2003 and 2012. The report notes hepatitis C as a major contributing factor to liver cancer, and cited that 25% of people with hepatitis B develop serious liver problems, including liver cancer.

For many reasons, there is an urgent need for the viral hepatitis movement to unite and bring advocates together on a national stage. Alarmingly, recent data from the CDC has shown that deaths associated with hepatitis C surpassed deaths associated with all fifty-nine other notifiable infectious diseases combined.[2]

Rising Mortality Associated with HCV in the U.S.

The opioid and heroin epidemics are fueling the spread of new hepatitis B and C infections among people who inject drugs (PWID) across the country. Though many officials focused on HIV outbreak in Scott County, Indiana, a CDC report shows that 85% of PWID who contracted HIV were also coinfected with hepatitis C. Due to similar routes of transmission, studies show that about 25% of all people with HIV also have chronic hepatitis C, and 10% of people with HIV are living with hepatitis B.

Hepatitis B disproportionately affects the Asian American/Pacific Islander (AAPI) community.  While AAPIs make up less than 5% of the total U.S. population, they account for more than 50% of Americans living with chronic hepatitis B. We also continue to see perinatal transmission of hepatitis B despite having a safe and effective vaccine to prevent the disease. Community organizations struggle to address these vast disparities within the populations they serve with finite resources.

To address the necessity of uniting advocates, three national coalitions took action. This March, Hep B United (HBU), the Hepatitis Appropriations Partnership (HAP), and the National Viral Hepatitis Roundtable (NVHR) coordinated an event similar to AIDSWatch called Hepatitis on the Hill (HOTH). Over a two-day period, over one hundred constituents from twenty-seven states descended on Capitol Hill to educate their legislators on the impact of hepatitis B and C in their communities.

Throughout the event, advocates from across the nation engaged in conversation about the importance of screening, education, and treatment access, as well as the barriers they face in addressing these issues in their communities.

A key part of HOTH included networking, connecting advocates with resources, and framing constituents’ experience with viral hepatitis for legislators. In practicing their stories through role-play, participants prepared to ask their legislators to:

1. Support increased funding for the Division of Viral Hepatitis at CDC in the FY 2017 LHHS Appropriations Bill.
2. Urge legislators to maintain the modified syringe language included in the FY 2016 Appropriations Bill, which allows syringe service programs to use federal funds to support existing organizational efforts, though not to specifically purchase syringes.

Another highlight of the event was the participation of Dr. John Ward, the Director for the Division of Viral Hepatitis (DVH) at the CDC, and Dr. Rich Wolitski, the Acting Director from the Office of HIV/AIDS and Infectious Disease Policy (OHAIDP). Participants had the opportunity to engage in conversation with these officials, and a special forum allowed advocates the opportunity to provide Dr. Wolitski with input on the planned update of the HHS Viral Hepatitis Action Plan.

These parallel events in the viral hepatitis and HIV communities highlight the overlap between these movements that serve populations living with certain infectious diseases, particularly with HIV and hepatitis B and C. The rates of HIV, HBV, and HCV coinfection remind us that these movements are not separate from one another, but interconnected. At this stage of these pandemics, there is enormous potential for collaboration and resource-sharing to combat HIV and viral hepatitis.

We encourage you to join the fight and explore how HIV and viral hepatitis coinfection impacts the population you serve. There are many ways to connect with others working in hepatitis! Here are a few:

Want to become more involved in hepatitis and appropriations?

Visit the Hepatitis Appropriations Partnership’s (HAP) website to learn more!

Want to connect with other organizations working in viral hepatitis?

Join NVHR and follow us on Facebook and Twitter!

Want to be involved with hepatitis B?

Visit www.hepbunited.org for more information, and follow HBU on Facebook and Twitter!

[1] Perz, J. F., Armstrong, G. L., Farrington, L. A., Hutin, Y. J., & Bell, B. P. (2006). The contributions of hepatitis B virus and hepatitis C virus infections to cirrhosis and primary liver cancer worldwide. Journal of hepatology, 45(4), 529-538.
[2] Ly, K. N., Hughes, E. M., Jiles, R. B., & Holmberg, S. D. (2016). Rising Mortality Associated with Hepatitis C Virus in the United States, 2003-2013.Clinical Infectious Diseases, ciw111.

________

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Co-Paying the Piper

By: Marcus J. Hopkins, Blogger

One of the biggest changes for many lower income patients under the Affordable Care Act (ACA) has been the transition to paying co-pays for their medical care. For patients living with HIV, this has been exceptionally difficult in states whose Ryan White Part B programs – the AIDS Drugs Assistance Programs (ADAPs) – have opted to pay for their clients’ insurance premiums, rather than simply directly paying for services as they’re administered. What this means for patients is that, where they once never had to worry about doctors’ visits or paying for medications, depending on their state of residence, they may not be responsible for paying co-pays for services.

To the average American with a stable, if thinly stretched, income, this may not seem like a big deal; but, to those of us living with HIV/AIDS on fixed or fluctuating incomes, this distinction may create an additional barrier to care that may not have existed, prior to now. It can be difficult to explain to people how, when one’s income is already low, paying $20-$30 for a visit to the doctor requires foregoing other basic necessities such as food or a utility bill put off until later; paying $100 for your HIV medications every month can mean that you no longer have enough to afford rent.

People who live without a chronic disease often fail to see the hardships presented with treating that disease. Outside of simply the cost of treatment, there are additional social and emotional issues at play. Having to rely on government assistance for any reason is frequently derided in our nation as a weakness; a moral failing that renders the recipient incapable of taking care of themselves. As such, there is often a guttural sense of shame and humiliation that accompanies having to rely on these assistance programs. It is this component that is so often left out of the conversation.

More than just the psychosocial aspect of seeking assistance, the reality is that, when a patient discovered their HIV-positive status, they are often unaware of the options that exist, in the way of coverage. Now that people with pre-existing conditions can no longer be barred from insurance coverage, many simply assume that private insurance is the only option available to them. In states where Medicaid services have not been expanded to include coverage for people living with HIV, many patients are unaware of the existence of the Ryan White or ADAP programs that are in place to provide assistance for lower income patients who cannot afford the cost of treatment.

Even with these programs in place, their assistance does not meet the Federal requirement for insurance coverage, and clients whose incomes are higher than the maximum allowed for exemption from the penalty for not having private insurance are often left to foot that bill, as well. This is one of several reasons why many ADAP programs are switching their coverage over to paying for private insurance, rather than a direct payment model.

For lower-income patients still having trouble paying for treatment, even with insurance, Patient Assistance Programs (PAPs) exist that can help to partially or totally defray the costs. These programs are, however, largely unknown to people outside of the “know,” as it were – if you don’t “know” about them, you don’t know about them, and oftentimes, you only find out about them through random word of mouth. Sadly, many ADAP programs’ employees are unaware of these programs, and aren’t able to provide adequate information about either their existence or the requirements for applying.

One such program – the Patient Access Network (PAN) Foundation – has long served this purpose for people who are underinsured living with HIV. The maximum award level is $7,500 per year. Patients may apply for a second grant during their eligibility period subject to availability of funding.

Unfortunately, funds available through this program have been depleted. As of March 14th, 2016, patients seeking assistance for HIV are being encouraged to go to the Patient Advocate Foundation (PAF) for assistance. Individuals who have been recently approved for grants through the PAN Foundation will not be affected. When needing additional assistance or to re-enroll, individuals are encouraged to check back with PAN to determine if the fund has been re-opened and/or to seek additional support through PAF.

While the funds at PAN for HIV assistance have been exhausted for 2016, there are still funds available for patients who are mono- or co-infected with HCV at both PAN and PAF; one only needs to apply separately for assistance with that specific condition, as funds for HIV drugs do not carry over to HCV without an additional application.

Additionally, it should be made clear that these programs are not designed for the uninsured; rather, they are designed for the underinsured – those who carry some form of insurance, but for whom co-pays are unaffordable. It is also crucial to understand that these programs cover only the costs associated with drug co-pays; office visits and other non-pharmaceutical costs are not covered, and are left up to the individual and/or the Ryan White funds allocated to their clients.

For more information about PAF, and how it differs from the Patient Advocate Foundation, please visit www.patientadvocate.org.

________
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

The 'Magic City' Embodies the Denver Principles

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Birmingham is largest metropolitan city in Alabama, and its deep rooted history earned it the nickname, "The Magic City." Once a bustling manufacturing hub in the South, it is now recognized nationally for some of its leading medical research. Unfortunately, Alabama -- like most states in the Deep South -- has been disproportionately impacted by HIV/AIDS. Yet, thanks to organizations such as AIDS Alabama, there is a vibrant grassroots advocacy community fighting to raise awareness, advance linkages to care, and promote the ideals embodied in the "Denver Principles."

Photo Source: POZ.com

The ADAP Advocacy Association (aaa+^®) is committed to keeping the patient perspective at the center of its advocacy and educational activities, especially at the local level. After all, all HIV/AIDS organizations -- whether it is a advocacy organization, think tank, or service provider -- exist to promote greater patient health and wellness. Isn't that what the Denver Principles were all about, even as a movement that is still evolving?

(Editor's Note: Please read Larry Bryant's 2013 blog, Will The Denver Principles Ever Be Relevant To Black People Living With HIV & AIDS?)

To that end, aaa+^® again this year will host regional summits designed to gather community input on the AIDS Drug Assistance Programs (ADAPs). Community input at the local level is essential to improving access to care and treatment for people living with HIV/AIDS as the Affordable Care Act (ACA) continues to be implemented across the nation. With some of the ongoing challenges facing people living with HIV/AIDS under the ACA, it is important for the advocacy community to share their insight and perspective.

There will be a regional summit held in Birmingham, Alabama on April 15th. It is being held in collaboration with AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more about the ADAP Regional Summit in Birmingham, or to register for this important community event, go to http://adapadvocacyassociation.org/events.html.