Thursday, May 19, 2016

Foul Called; Weak Patient Protections Offered by HHS

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

The U.S. Department of Health & Human Services ("HHS") dropped the ball when it recently defined discrimination in plan benefit design under the Affordable Care Act ("ACA"); that statement is plainly put because it is true! Absent clearer guidelines, HHS basically issued a green light for insurance carriers to potentially discriminate against people living with chronic illnesses, including HIV/AIDS. Stakeholder groups have cried foul over the regulations, characterizing them as weak.

The ACA's Section 1557 is the nondiscrimination provision of the law. It law prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs or activities. Section 1557 builds on long-standing and familiar Federal civil rights laws: Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973 and the Age Discrimination Act of 1975.[1]

Insurance Claim Form with the words, DENIED
Photo Source: Class Action News
The "I Am Essential" coalition sent a letter to HHS signed by 197 organizations on the proposed rule. The letter outlined numerous concerns. Among them:[2]

  • placing all or nearly all medications to treat a certain condition on the highest cost-sharing tier;
  • not covering certain medications or not following treatment guidelines;
  • imposing excessive medication management tools such as unreasonable prior authorization, step therapy requirements, and switching medications midyear;
  • charging high cost-sharing to beneficiaries with chronic or serious conditions;
  • and having narrow and exclusionary provider networks.

To read the letter, CLICK HERE.

There is plenty of evidence to suggest that marketplace plans are already engaged in discriminatory practices, which in many cases have adversely impacted patients living with HIV/AIDS. High deductibles, high co-insurance, and high co-payments are a few tactics being used by insurance carriers to shift the cost of care to patients living with chronic illnesses. To read last week's blog on this trend, CLICK HERE.

HHS, however, did leave the door open to review alleged discrimination on a case-by-case basis. Albeit welcome news, there has to be a better approach to potential barriers that may arise.

Carl Schmid, Deputy Executive Director, The AIDS Institute, characterized some of the concerns, "We are disappointed that HHS did not do a better job at specifically defining discrimination in plan benefit design. Despite the many benefits of the ACA and its prohibition on denying coverage to beneficiaries with a pre-existing condition, some insurance plans are finding ways to discriminate against patients, particularly those with chronic and serious health conditions.  Those practices should be defined and clearly prohibited. However, we are pleased that HHS reiterated they will review plans for discriminatory practices on a case-by-case basis through their enforcement activities, and identified a number of examples of possible discriminatory plan design.  We urge the Administration to rigorously use their oversight and enforcement tools."[3]

Even the pharmaceutical industry's trade association expressed caution over the regulations issued by HHS, acknowledging that they neglect to define discrimination. The Catalyst, which is the Pharmaceutical Research and Manufacturers of America's (PhRMA) blog, said:

"Protecting patients from discriminatory benefits is particularly important when it comes to plan formularies. For many patients with chronic conditions, it is relatively easy to predict their prescription drug needs. This means plans may be able to discourage enrollment by certain higher cost individuals simply by not covering the medicines they need or placing them on a high formulary tier. Unfortunately, we have seen many marketplace plans placing all medicines for certain conditions on the specialty tier or on a tier with coinsurance above 40 percent. In some cases, this is even happening in classes where generics are available. This leaves patients with no lower cost alternative and goes against the very nature of insurance by punishing individuals who happen to need a particular class of medicine."[4]

It is crucial that the public health community continue to monitor these glitches with the Affordable Care Act and collaborate on solutions to better assist patients living with chronic illnesses. Left unchecked, insurance carriers have demonstrated a history of pushing the envelope when it comes to discriminating against HIV/AIDS.

[1] U.S. Department of Health & Human Services, Office of Civil Rights, "Section 1557 of the Patient Protection and Affordable Care Act," 2016.
[2] I Am Essential, "Patient Groups React to Final ACA Nondiscrimination Rule," May 13, 2016.                                 
[3] I Am Essential, "Patient Groups React to Final ACA Nondiscrimination Rule," May 13, 2016. 
[4] Pharmaceutical Research and Manufacturers of America, The Catalyst, "New non-discrimination rule neglects to define discriminatory benefits," May 19, 2016.

Friday, May 13, 2016

Are ACA Exchange Plans Fair to People Living with HIV/AIDS?

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

On April 25th, Avalere Health published a comprehensive study on marketplace exchange plan formularies offered under the Affordable Care Act ("ACA"); it includes a cross-condition analysis addressing formulary coverage, cost sharing and access. The study, which was prepared for the Pharmaceutical Research and Manufacturers of America® (PhRMA), suggests that certain disease classes -- including HIV/AIDS -- experience bias under many of the plans.

Most of the law’s major provisions were phased in by January 2014, with other provisions phased in by 2020. The ACA has numerous implications generally on the United State’s health care delivery system, but more specifically on the access to healthcare afforded to people living with HIV/AIDS, as well Viral Hepatitis. What’s more, ongoing Medicaid expansion and the implementation of insurance exchanges will also impact nearly all health care providers, as well as their patients.

According to the Avalere study, formulary access for patients with HIV/AIDS has expanded though other barriers remain. The study included the following summary:[1]

Classes Included:

  • Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs), Nucleoside and Nucleotide Reverse Transcriptase Inhibitors (NRTIs), Protease Inhibitors (PIs), and HIV-Other

Coverage for Key HIV Classes:

  • In high-enrollment states, the average exchange plan covers at least 43 of 51 HIV/AIDS medications
  • Single-source products in the therapeutic area appear on formulary at least 65% of the time in all states other than Utah, which has coverage 25% of the time

Utilization Management for HIV Classes:

  • Exchange plans have continued to reduce their use of UM for HIV/AIDS medications. Now, exchange plans use UM less frequently than employer plans for these medicines

Tiering and Cost Sharing for Key HIV Classes:

  • Preferred placement has increased for HIV/AIDS medications in 2016 exchange plans, though employer plans still use the specialty tier far less often than exchange plans do. And, a portion of plans continue to place all HIV drugs on the specialty tier
  • Copays are common across HIV classes, with an average copayment of $66. When used, coinsurance is 35% on average
Many Insurers Still Placing All Medicines to Treat Chronic Conditions on Highest Cost-Sharing Tier PERCENTAGE OF 2016 SILVER PLANS PLACING ALL COVERED DRUGS IN THE CLASS ON A SPECIALTY TIER
Photo Source: PhRMA

One of the more alarming findings demonstrates that many of the marketplace exchange plans require high cost sharing, which could be discriminatory. In 2016, about 1 in 10 health plans are placing all HIV medicines in certain classes on the specialty tier.[2]

This discriminatory practice took center stage in 2014, when four insurance carriers were sued by the National Health Law Program (NHeLP) and the AIDS Institute. The complaint charged “inordinately high co-payments and co-insurance for medications used in the treatment of HIV and AIDS" against Coventry Health Care Inc., Cigna Corp., Humana Inc. and Preferred Medical.[3]

Additional findings include:[4]
  • In states with high exchange enrollment, average plans cover at least 43 of 51 drugs.
  • Across classes, plans cover HIV/AIDS innovators at least 76% of the time, except Utah.
  • In 2016, exchange plans use Prior Authorization for HIV meds less often than before, but still more than employer plans.
  • Exchange plans’ placement of HIV/AIDS drugs on the preferred tier rises to more than half of the time in 2016.
  • Copays are more common than coinsurance, though when used, coinsurance averages 35%.
  • Exchanges have lower coverage for STRs than for other single-source NTRIs.
  • Ten percent or fewer plans in 44 states and D.C. require coinsurance above 30% for all covered NNRTIs.
  • New Jersey has the highest proportion of plans requiring coinsurance of 30% or more for all covered NRTIs.
  • Alaska, Minnesota, and New Jersey have the highest percentage of plans requiring coinsurance above 30% for all protease inhibitors.
  • Coinsurance above 30% for all covered therapies in HIV-other class is most common among plans in Alaska, New Jersey, Utah.
The ACA has largely benefited patients living with HIV/AIDS by expanding access to care, and lowering the ranks of the uninsured and under-insured. That said, despite some marked improvements in many exchange plans there remain ongoing barriers facing too many patients. Among them, higher deductibles, co-payments and co-insurance.

[1] Avalere Health, "PlanScape® Review of Patient Access to Medicines in Exchange Plans, By Condition," p. 62, April 2016.
[2] Pharmaceutical Research and Manufacturers of America®, "New Avalere Study: Health plan formularies continue to suggest bias against individuals with certain health conditions," April 2016.
[3] Insurance Business Magazine, "Insurers accused of HIV discrimination in ACA marketplace," June 3, 2014.
[4] Avalere Health, "PlanScape® Review of Patient Access to Medicines in Exchange Plans, By Condition," p. 63-73, April 2016.

Friday, May 6, 2016


By: Kathie Hiers, President & CEO, AIDS Alabama

What is the greatest unmet need for people living with HIV (PLWH)? Medical care and medications?  Transportation? Food and nutritional needs? Many, many surveys and research findings provide very a different answer: housing. When you think about it, the need for safe, decent, affordable housing is a no brainer. How can you and your family possibly succeed in medical care or in the workplace or any place else without a place to lay your head, to keep your meds, and to protect your children? I would go so far as to say housing = healthcare!

According to the National Low Income Housing Coalition’s 2015 Out of Reach Report, not a single state in our nation offers a one-room apartment that a person working full time and making minimum wage can afford. In fact, federal minimum wage has not increased since 2009 while rents have risen in almost all metropolitan areas. For PLWH, the need for housing assistance is far too commonplace. According to the National AIDS Housing Coalition, at any given time about 50% of 1.2 million PLWH in our country experience homelessness or housing instability. Additionally, research indicates that people who are unstably housed or homeless have HIV rates up to 16 times as high as persons in stable housing. Unfortunately the need substantially outstrips the resources. But here’s the bottom line: housing for PLWH improves medical outcomes, reduces new transmissions through a reduction in risky behaviors, and provides cost savings. So much research exists to confirm these results that AIDS and Behavior in 2007 dedicated an entire issue to illustrate the findings.

Report Cover for "Out of Reach 2015"
Photo Source: National Low Income Housing Coalition

The only HIV-specific funding source from the U. S. Department of Housing and Urban Development (HUD) is the legislation known as Housing Opportunities for Persons with AIDS (HOPWA). Although HOPWA is relatively small within the HUD portfolio at about $335 million, the program has been extraordinarily effective and well rated, enjoying bipartisan support. Research from New York City shows that clients assisted by HOPWA collectively have a viral load suppression of about 73%, more than double the national average of about 30%. HOPWA was created in 1992 to address the housing and service needs of PLWH. Currently, however, the statutory funding distribution methodology is based on cumulative AIDS cases and counts more deceased cases (over 650,000) than living cases. On top of the formula distribution (don’t forget: based on deceased people and AIDS only), urban areas with higher-than-national averages also receive 25% of the formula funds as a bonus, based on three-year AIDS incidence, providing disproportionate funding to these jurisdictions. As a result of this antiquated methodology, I once saw the Director of the Office of HIV/AIDS Housing, David Vos, tell a group of advocates that the per-case funding can range from $200 to $10,000. Should funding this important really be based on deceased cases and distributed in a roller coaster ride of injustice?

The National AIDS Housing Coalition (NAHC) and many other HIV organizations have been advocating for an update to this formula distribution for many years in an effort to distribute the resources in a way that better reflects the current HIV epidemic. Both the Obama Administration and HUD are working in concert with NAHC and elected officials to promote modernization that would include the following changes:
  • A shift from cumulative AIDS to living HIV/AIDS, a change that occurred within the Ryan White legislation in 2009;
  • The inclusion of an area’s housing costs and poverty rates as formula factors; and
  • A gradual implementation over a five-year period to include a provision to cap annual losses at 5% and gains at 10% (U. S. Congress, House, H.R. 3700 and H. R. 4707; and Senate, S. 2668).
These changes would provide substantial additional resources to many rural areas, small to mid-sized cities, and states, based on the jurisdiction’s burden of cases, Fair Market Rent, and poverty index.

Although funding to support stable housing may never fully meet the needs of PLWH, advocates must continue to elevate this topic and to integrate housing needs into other HIV resources, such and the Ryan White HIV/AIDS Program and other programs within the Centers for Medicare and Medicaid Services. Innovative collaborations between branches of government and funding opportunities that combine structural interventions, such as housing, with other medical and supportive services could only help to alleviate barriers to good health caused by a lack of housing for PLWH.

AIDS Alabama provides an innovative approach to the use of our state HOPWA funds. Through partnerships with all of the AIDS Service Organizations, AIDS Alabama makes HOPWA rental assistance and supportive services available in all 67 counties of the state. We believe that housing is a human right and that people in need should have access to assistance no matter what zip code they call home. But we don’t stop with HOPWA! Our agency has continued to develop HIV-specific housing across the state and in the Birmingham area that we can make affordable to our clients.  AIDS Alabama is extremely active in our local Continuum of Care to serve the area’s homeless population. We believe in HUD’s Housing First model, which gets people into safe housing and then allows us to assess and address other needs that will keep our new residents healthy and independent.  Through these homeless funds we offer substance use treatment and mental health services for our residents. We are able to access Shelter Plus Care vouchers, which work like Section 8 assistance for people with disabilities. We work especially hard to serve the chronically homeless and to get them into care. In order to do that, we provide about 20,000 legs of transportation to medical appointments each year. We are extremely excited about our newest project that will begin in October 2016, which will target young, homeless LGBTQ populations. And, of course, case management services are available to all of our clients.  Navigating the worlds of health care, housing, and insurance is hard for anyone!

At AIDS Alabama our employees, residents, and clients living with HIV play a critical role in making sure that we remember who we serve and that we serve in the most efficient and helpful way possible. Persons living with HIV must have meaningful involvement in shaping everything that we do as an agency. Hopefully one day soon we can end this epidemic in the United States.  Until that happy day we will work together toward this goal…and make sure that everyone has a place to call home while we do this work!


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. 

Friday, April 29, 2016

Restricted Access to Care under Insurance Network Narrowing

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

One community that the Affordable Care Act ("ACA") has served particularly well is people living with HIV/AIDS. The law has led to the elimination of pre-existing condition barriers, lifetime limits on the amounts insurers have to pay, and the prescription drug “donut hole” under Medicare Part D, to name only a few. Expanded screening for HIV-infection is also an important feature of the law. That said, new barriers now face many people living with HIV/AIDS trying to access care and treatment. Among the most troubling is insurance network narrowing.

The ADAP Advocacy Association hosted a roundtable discussion on the "Restricted Access to Care under Insurance Network Narrowing" in Birmingham, Alabama earlier this month. The practice of narrowing networks is a cost-savings tool utilized by insurers, but patients find fewer doctors and hospitals in their network...or pay more to use a provider of choice. The practice has taken on a life of its own under the ACA.[1]

Funnel with the words, "Narrowing Provider Networks," going down it.
Photo Source: California Broker

The issue isn't going away, which is prompting advocates to combat it. The forum in Birmingham included an in-depth policy discussion on insurance network narrowing with the following panelists:

  • David Poole, Legislative Affairs, AIDS Healthcare Foundation
  • Wendi Clifton, President, WL Clifton Political Consulting
  • John Dunnam, Positive Leadership Council, AIDS Alabama
  • William Arnold, President & CEO, Community Access National Network
Panelists discussing insurance network narrowing.
L-R: B. Arnold, J. Dunnam, W. Clifton, and D. Poole
One consistent theme emerging is consumer choice -- including among people living with HIV/AIDS -- is indeed "narrowing." In Georgia, numerous changes to the marketplace plans have resulted in no Platinum Plans being offered...and costs are increasingly being shifted to the patient. One problem for patients, such cost-containment tactics yield a "push-pull" paradigm with rising drug costs versus insurance carriers mitigating risk. The end result is the same, and that is both contribute to access to care and treatment barriers.

For example, Grady Health System in Georgia provides over $200 million in indigent care because over half the population experience insurance-related barriers. This figure is problematic for people living with HIV/AIDS considering that the Peach State is one of the leading states in new HIV infections.

Patients in Florida are experiencing similar challenges, too. Summarized David Poole, Director of Legislative Affairs for AIDS Healthcare Foundation, "Narrow networks are forcing Floridians to access providers who they do not know, do not have an existing trusting relationship and often times are not experienced as HIV providers. The treatments have become highly effective and are much more simple regimens but the disease state remains very complex."

The problem with insurance network narrowing is compounded by the "balance billing" practice by insurers. characterizes balance billing as, "When a provider bills you for the difference between the provider’s charge and the allowed amount."[2]

(Editor's Note: Additional barriers to care and treatment were outlined in our previous blog, "Future of ADAP in Medicaid Non-Expansion States")

As the ACA continues to unfold, growing pains will certainly remain and none probably more frustrating than insurance network narrowing. People living with HIV/AIDS -- just like any patient -- should be afforded the opportunity to visit the provider of their choice, especially for specialty services such as infectious disease care and treatment.

The ADAP Regional Summit in Birmingham, Alabama was held in partnership with the AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more, visit

[1] Ableson, Reed, The New York Times, "More Insured, but the Choices Are Narrowing,"May 12, 2014; last viewed online at 
[2], "Balance Billing," 

Wednesday, April 20, 2016

Future of ADAP in Medicaid Non-Expansion States

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

On April 15th, access to care and treatment took center stage in Birmingham, Alabama as the ADAP Advocacy Association hosted a roundtable discussion on the "Future of ADAP in Medicaid Non-Expansion States." It is an issue with deep rooted concerns among people living with HIV/AIDS, especially since the Affordable Care Act ("ACA") was designed to expand both. According to Families USA, there are currently 19 non-expansion states...mostly situated in the South, and rural states in other parts of the country.

Map of the United States showing the states with Medicaid expansion versus non-expansion.
Photo Source: Families USA

One of the most troubling unintended consequences of the ACA has been exacerbated health disparities in the South, evidenced by only three southern states having expanded their Medicaid programs (Arkansas, Louisiana, and West Virginia).  Yet the South is arguably the area of the country that needs greater access to care and treatment, and not less.

The forum included perspectives from Alabama, and Florida -- both Medicaid non-expansion states. At issue was navigating how to advocate around the new ACA-led healthcare world increasingly driven by an insurance model, rather than a service-delivery model. For example, new barriers have emerged preventing some people living with HIV/AIDS from obtaining medications that may have been previously more accessible to them.

Aside from Alabama and Florida, other non-expansion states represented at the forum included Georgia, North Carolina, and Tennessee. The forum included an in-depth policy discussion with the following panelists:

  • Joey Wynn, Community Relations Director, EmpowerU
  • Michael J. Mugavero, MD, MHSc, Professor of Medicine, University of Alabama at Birmingham
  • Alex Smith, Director of Policy and Advocacy, AIDS Alabama
  • Warren Dates, Sr. Peer Linkage Specialist, Alabama Department of Public Health

Panelists discussing Medicaid.
L-R: A. Smith, Dr. M. Mugavero, W. Dates, and J. Wynn
Florida has learned to leverage its existing programmatic structure and wrap-around services under Ryan White to minimize clients falling through the cracks. In many cases, clients have experienced fewer barriers to care and treatment by receiving their medications via the AIDS Drug Assistance Programs (ADAPs), as compared to what is unfolding in some Medicaid expansion states. Florida could very well be the exception, though.

In Alabama -- where Blue Cross Blue Shield yields a monopoly on the state's insurance market -- efforts continue to focus on prioritizing services for people living with HIV/AIDS. On a positive note, ADAP waiting lists have been completed eliminated and client advocacy has become more specialized by focusing on related issues (i.e., housing and transportation).

In addition, Alabama’s Insurance Assistance Program (AIAP) was launched in 2015, providing cost- effective health insurance to eligible clients. This approach to linking clients to timely, appropriate care and treatment is paying dividends with outcomes, too. According to the State of Alabama AIDS Drug Assistance Program (ADAP) Quarterly Report, "The majority of clients actively served by ADAP reported viral suppression (i.e., viral load ≤ 200 copies/mL) at the last viral load test collected during the preceding 12 months. However, the level of viral suppression varied by service category with MEDCAP reporting the most virally suppressed clients (89 percent), followed by AIAP (79 percent) and ADAP (56 percent). As only fifty-six percent of active ADAP clients are virally suppressed, this indicates a need for improved adherence to antiretroviral therapy (ART) and retention in care in this service category."[1]

Ironically, Alabama and Florida are experiencing different challenges related to the marketplace plans. In Alabama, there are not enough plans available to people living with HIV/AIDS (only 12), whereas in Florida too much time is spent "policing" the plans because there are so many.

The discussion also provided an opportunity to share lessons learned, and the implementation of successful strategies aimed at increasing access to care. Among them, local agencies leveraging 340B rebates to expand services and supports in critical areas, and the deployment of telemedicine networks.

Medicaid expansion will undoubtably remain an issue with profound repercussions on people living with HIV/AIDS, especially considering the uneven way it happening across the country. In the meantime, partnerships between care providers will grow in importance, as well as leveraging existing dollars to promote better health outcomes.

The ADAP Regional Summit in Birmingham, Alabama was held in partnership with the AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more, visit


[1] Alabama Department of Public Health, Division of HIV Prevention and Care, "State of Alabama AIDS Drug Assistance Program (ADAP) Quarterly Report," March 31, 2016; last viewed online at 

Thursday, April 7, 2016

ADAP Directory & ADAP Formulary Database Link Stakeholders to Important Tools

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

On March 15th (2016), an important resource was once again made available by the National Alliance of State & Territorial AIDS Directors (NASTAD). NASTAD released its 2016 Online AIDS Drug Assistance Program (ADAP) Formulary Database and accompanying User’s Guide. The Database complements the patient-centric ADAP Directory, which is the ADAP Advocacy Association's flagship program.

NASTAD describes the provider-focused Database as "an online, searchable, publicly available resource detailing state-by-state ADAP coverage of medications both individually and by drug class including HIV antiretroviral (ARV) treatments, “A1” Opportunistic Infections (A1 OI) medications, treatments for hepatitis B and C, mental health and substance use treatment medications, and various vaccines and laboratory tests."[1]

Key findings from the 2016 ADAP Formulary Database include:[2]
  • 3 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
  • 38 ADAPs cover one or more hepatitis B treatment medication
  • 33 ADAPs cover one or more hepatitis C treatment medication
  • 19 ADAPs cover one or more of the curative direct acting antiviral (DAA) hepatitis C (HCV) treatment medications
  • 9 cover daclatasvir (Daklinza)
  • 17 cover dasabuvir, ombitasvir/paritaprevir/ritonavir (Viekira Pak)
  • 19 cover ledipasvir and sofosbuvir (Harvoni)
  • 8 cover ombitasvir, paritaprevir and ritonavir (Technivie)
  • 12 cover simeprevir (Olysio)
  • 17 cover sofosbuvir (Sovaldi)
  • 43 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
  • 14 ADAPs cover one or more substance use treatment medication 
The ADAP Directory – launched in 2014 with ongoing support from AbbVie, Gilead Sciences, Janssen Therapeutics, Merck, ViiV Healthcare, and Walgreens – ensures that people living with HIV-infection have access to the information and resources they need to live healthy and productive lives. The ADAP Directory consolidates useful ADAP-related information from all 50 states and 6 territories into one convenient location for:

  • easy access to ADAP resources organized by state and territory;
  • updated, current information for all 56 state ADAPs -- including drug formularies; and
  • uniform presentation of ADAP information for effective advocacy and easy dissemination.
The “Perfect Storm” that had ravaged the cash-strapped ADAPs between 2008-2010 exposed some very real deficiencies in the amount and quality of information made readily available to patients living with HIV/AIDS. Today, patients...and in fact, all community stakeholders...have much more user-friendly information at their disposal.

Aside from the interactive map, which allows users to navigate all 56 ADAPs, other important resources and tools are available at the ADAP Directory. Among them, patient medication assistance programs and pharmaceutical patient assistance programs.

Chart displaying various patient assistance programs.

Chart displaying pharmaceutical patient assistance programs.

To learn more about the ADAP Directory, visit To learn more about the NASTAD Formulary Database, visit
[1] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.
[2] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.

Thursday, March 31, 2016

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.
Chart showing Hepatitis C infection rates rising, as other infectious disease rates declining.

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 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.