Friday, May 15, 2015

Need for National Data on HCV Prevention, Care, and Treatment to Impact the National HCV Epidemic

By: Marissa Tonelli, Senior Manager, HealthHCV Initiative

The Centers for Disease Control and Prevention (CDC) estimates 3.2 million people in the United States are living with chronic hepatitis C infection; 80% of whom will develop chronic liver disease, close to a quarter of whom will go on to develop cirrhosis; and, about 5% of whom will die as a result of chronic HCV infection.[1]  These continue to be estimates as a result of limited national data and the disparate nature of the datasets, which have been barriers to fully understanding the extent and details of the national HCV epidemic. Without a fully resourced, national hepatitis surveillance system, clinical providers and public health officials rely on limited data to inform decision-making. According to the European Association for the Study of Liver Disease (EASL) Recommendations on Treatment of Hep C, inaccurate data, as well as lack of data for specific sub-populations, is an element hindering the design of effective public health interventions and limits the development of provider guidelines.[2]  Collection and analysis of national data related to HCV prevention, care, and treatment is essential to informing effective public health and clinical interventions to impact the epidemic.

HealthHCV Survey
Last month, HealthHCV, an advocacy and education initiative of HealthHIV, launched its inaugural State of HCV CareTM national survey. Findings from this first-of-its-kind national survey will assist in setting the direction of HCV provider and consumer education efforts in 2015 and beyond. The data collected will provide stakeholders with a comprehensive look at how developments in HCV testing, access, and treatment have impacted provider and consumer behaviors around HCV care nationally.

HealthHCV included input from viral hepatitis advocacy groups, payers, and HCV care providers in the development of the survey, which will identify trends in the HCV landscape, and education and training needs of providers to deliver patient-centered, quality HCV care in a variety of care settings, including primary care. In addition, consumer/patient case studies on access and other issues will be identified to inform HealthHCV’s national awareness efforts and will be included in a national HCV access and adherence campaigns conducted by HealthHCV and several partners.

Collecting meaningful data on behaviors of healthcare providers around HCV prevention, care, and treatment will allow us to make better-informed decisions that improve quality of care. Additionally, the aggregate national data being collected will assist public health officials, policy makers, and advocates to see the a picture of HCV prevention and treatment barriers in the US.

To participate in the survey, go to:

HealthHCV will present preliminary results from the survey during National Hepatitis Awareness Month activities in May 2015.

If you are interested in distributing the survey through your networks, please contact Marissa Tonelli, Senior Manager of HealthHCV, at or 202-507-4726. For more information about HealthHCV, visit

[1] Content source: Division of Viral Hepatitis and National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
[2] European Association for the Study of Liver Disease (EASL), EASL Recommendations on Treatment of Hep C, April 2014

Friday, April 17, 2015

The Affordable Care Act and the Ryan White Program for Persons with HIV/AIDS

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

The Patient Protection and Affordable Care Act (PPACA), or the Affordable Care Act (ACA) – also known as Obamacare – continues to unfold and its overall impact is still yet unknown. 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 supports and services afforded to people living with HIV-infection, or viral Hepatitis, under the Ryan White CARE Act. What’s more, ongoing Medicaid expansion (or lack thereof) and the implementation of insurance exchanges will also impact nearly all healthcare providers, as well as their patients.[1]

Unfortunately, people living with HIV-infection have experienced some of the unintended consequences of the law – including discriminatory practices limiting their access to care and treatment. As patients have obtained a basic understanding of the ACA’s provisions, they have also learned numerous ways to assist with their advocacy to combat such unlawful practices.

Cartoon of patient opening a box that reads, "Do It Yourself Insurance Exchange," with a telephone and manual falling out of the box. The manual reads, "Obamacare Handbook."

Among them, patients have received guidance from federal agencies on the law's intersection with existing public health programs, especially as its relates to HIV/AIDS and Viral Hepatitis populations. They acquired information about insurance “adverse selection.” And thanks to many advocacy and legal organizations, they have developed a greater understanding of potential impact discriminatory practices, as well as non-discrimination protections.

One such organization assisting patients is The AIDS Institute (TAI). Last year, TAI and the National Health Law Program (NHeLP) filed a complaint with the federal government against several health plans in Florida, accusing them of engaging in discriminatory practices against people living with HIV-infection. That complaint has already yielded positive results for patients, evidenced by Aetna (one of the companies named in the complaint) agreeing to reduce patient costs for HIV medications nationwide in the qualified health plan marketplace.

“Aetna’s announcement will help ensure that people living with HIV/AIDS throughout the country will have greater access to essential medicines at a more affordable cost,” said Michael Ruppal, Executive Director for The AIDS Institute. “However, there are still many other insurers who are charging patients excessive costs for their HIV medications and this does not impact a patient’s non-HIV medications or other beneficiaries with other health conditions. We look forward to working with Aetna and other insurers to address continuing barriers to care and treatment, including inadequate drug formularies, high cost co-insurance & deductibles, and restricted networks for people with HIV/AIDS, hepatitis, and other chronic health conditions.”[2]

Screenshot of website, "Find health coverage that works for you."

In an effort to paint a clearer picture of the ACA's impact on patients, TAI has launched a survey for people living with HIV-infection to share their experiences.

This survey is for people who are living with HIV/AIDS and have had an experience with their healthcare that they would like to share. We are especially interested in those individuals that have had changes to their healthcare occur since October 1, 2013. Ryan White, AIDS Drug Assistance Program (ADAP), AIDS Insurance Continuation Program (AICP), Affordable Care Act - Marketplace Insurance Plans, Medicaid, Medicare programs are of particular interest.[3]

To complete the survey, CLICK HERE.


[1] ADAP Advocacy Association, "Impact of the Affordable Care Act, Medicaid Expansion & Insurance Exchanges on HIV/AIDS & Viral Hepatitis Services," November 6, 2013. 
[2] The AIDS Institute, "Aetna Agrees to Significantly Reduce Patient Costs," March 26, 2015.
[3] The AIDS Institute, "The Affordable Care Act and the Ryan White Program for Persons with HIV/AIDS," April 2015.

Friday, March 27, 2015

They Needed a Second Change to Finish First

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

The iconic 1986 Hollywood blockbuster, Hoosiers starring Gene Hackman, was based on the true story of a small-town Indiana high school basketball team that won the state championship despite all of the odds. It was a triumph of the human spirit, inspiring viewers of all ages. The movie's tag line, "They needed a second change to finish first," is a reminder that ordinary people can do extraordinary things.

Image of Gene Hackman talking to his high school basketball players in the movie, Hoosiers
Within the HIV/AIDS advocacy community, we are fortunate to be surrounded by so many inspirational leaders. They, too, serve as a reminder about the daily challenges faced by people living with HIV/AIDS, and yet how it is possible to overcome them. That is why it is important to reflect on the accomplishments achieved by individual, community, government and corporate leaders working to improve access to care and treatment for HIV/AIDS.

Last year, a lifetime commitment to fighting healthcare disparities in the South was showcased when the ADAP Champion Award was presented to Kathie Hiers, President & CEO of AIDS Alabama. At the same time, "newbies" Wanda Brendle-Moss and Patrick Ingram were applauded for their groundbreaking work, as they were presented with the ADAP Emerging Leader Award and ADAP Social Media Award, respectively.

Photo of retired U.S. Congressman Henry Waxman being presented with an award by Brandon Macsata
The Honorable Henry Waxman, M.C. (retired) being presented
 with the ADAP Lawmaker Award by Brandon Macsata,
CEO of the ADAP Advocacy Association
Now is the time for you to recognize such a leader by submitting a nomination for the 2015 Annual ADAP Leadership Awards. The ADAP Advocacy Association has issued a Call for Nominations for the following awards:

ADAP Champion of the Year (individual)
ADAP Emerging Leader of the Year (individual)
ADAP Corporate Partner of the Year
ADAP Community Organization of the Year
ADAP Lawmaker of the Year
ADAP Social Media Campaign of the Year
ADAP Grassroots Campaign of the Year
ADAP Media Story of the Year

To submit nominations, go to

Friday, March 6, 2015

An "Oscar" Moment for Ryan White Parts C & D

By: Candace Y. A. Montague, Freelance Health Writer

Patricia Arquette had a carpe diem moment at the Oscars recently where she used her moment on stage to draw attention to an issue she cares very deeply about: equal pay for women. Was it the best place to make bold statements about fair pay? Maybe so, maybe not. But the bottom line is she took hold of that time when she had the attention of a large audience and shined some light on a pressing issue that affects women. March is National Women and Girls HIV/AIDS Awareness month and this is our time to shine some light on an issue that will affect women and families living with HIV. The potential merging of Ryan White Parts C and D.

Patricia Arquette accepts the Oscar for Best Supporting Actress.
Patricia Arquette accepts the Oscar for Best Supporting Actress.

Let's look at Ryan White Part D funding. Ryan White Part D funding provides funding for programs that serve women, infants, youth and families living with HIV. Programs that receive funding from this source provide ambulatory and outpatient care that is centered around women and their families such as primary medical care services, dental services, mental health services, even transportation to bring clinical service providers out into the community. Part C provides similar funding but it's aimed for people living with HIV not just women and their families. It's goal is to provide early intervention services. The President proposes to consolidate these two funding sources in his 2016 budget. This consolidation calls for eliminating Part D services and expanding Part C's budget. Although this seems like a good idea on paper, there are a few important unanswered questions that cause heartburn when we look at them up close.

One part I get stuck on in this proposal is the word "people" in Part C. When previous Part D grantees who serviced women and their families apply or Part C funding, whom will they compete with for precious dollars? What kind of "people" will Part C administrators be looking for to give money? What part of the newly expanded budget is specified for women, children and youth living with HIV? The rules are not quite laid out in the proposal. It's dangerous to have something like funding wide open for applications without a set amount set aside for special populations such as women. This is not to say that other populations don't deserve specific funding. But when one in four people living with HIV are women, the same women that are heads of households across the country, it's pretty clear that they command some extra attention. Also, let's consider that when it comes to keeping these women in care, only about half of them are retained nationally. But Ryan White programs retain 77 percent of the women in their programs. Is there really any question as to why that is?

Protection needs to be the battle cry for NWGHAAD. Women living with HIV need protection now more than ever. We cannot allow language to write them and their needs out of the master plan. Women living with HIV need protection for those dollars that were designated for women-focused services. They need protection for the standing Ryan White Part D programs that won't be eligible to apply for funding if and when this consolidation occurs. They need protection from discrimination by ensuring that all parts of the Ryan White Program will indeed provide women-centered services. Most of all they need the community-based services that have been helping them all along protected from cuts that could cripple their programs.

Wanna get involved? Be a social media advocate. Join in a virtual all-day social media event happening the week after National Women & Girls HIV/AIDS Awareness Day: March 17, 2015.

National Women & Girls HIV/AIDS Awareness Day
This is designed to be a community-wide event and is sponsored by HIV Advocacy and Awareness and Advocacy Without Borders. They are inviting individuals, agencies, clinics, families, schools, support groups, places of worship, ASOs, and any other organizations, especially HIV advocacy groups and agencies focused on social justice, public health, human rights, etc. to join. From midnight to midnight, cover Twitter with tweets about the importance of retaining these critical family-centered HIV services, using the hashtag #SaveRyanWhitePartD along with any other hashtags relevant to your particular tweet (i.e. #womenshealth, #girlslikeus, etc).

And not just Twitter! You can also help promote this issue by sharing about it on other social media platforms (i.e. Facebook, blogs, YouTube, Tumblr, etc). ANYONE can participate; it is important to have both people living with HIV and allies involved.

Make this your Oscar speech moment to advocate for women living with HIV and Ryan White Part D. Carpe Diem!


Editor's Note: Candace Y. A. Montague is the recipient of the ADAP Advocacy Association's 2014 Media Story of the Year Award for her piece in TheBodyDotCom, "Continuing HIV Care for Formerly Incarcerated U.S. Citizens."

Friday, February 20, 2015

All Politics is Local

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

Former Speaker of the U.S. House of Representatives, Tip O'Neal
Tip O'Neal
"All politics is local" is an infamous phrase coined by the former Speaker of the House of Representatives, Tip O'Neal. The same could be said about advocacy, especially when it comes to promoting access to timely care and treatment for people living with HIV/AIDS. All too often, local advocacy at the grassroots level is overshadowed by the lure of national organizations. Ironically, it was the same grassroots advocacy that shaped the very nature of the successful HIV/AIDS advocacy movement -- embodied in the "Denver Principles" a generation ago.

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. 

So why not listen to what the patients have to say about their own health care, including their access to it?

In 2015, aaa+® will host a series of 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 continues to be implemented across the nation.

The first regional summit is being held in Atlanta, Georgia on April 10th. It is being held in collaboration with the AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN) -- two of the leading advocacy organizations committed to putting the patient first. To learn more about the ADAP Regional Summit in Atlanta, or to register for this important community event, go to

Friday, February 6, 2015

Health, Wellness, and Safety for All: The BOOM!Health Model and Social Determinants of Health

By: John Hellman, Director of Advocacy & Communications, BOOM!Health

BOOM!HealthI’ve been at BOOM!Health for just over 4 months now.  It didn’t take long, however, for me to realize that BOOM!Health does health very differently.

Most policy discussions around healthcare nowadays involve a conversation about the “social determinants of health” and the impact they have on an individual’s health. Poverty, income, housing and homelessness, immigration status, and discrimination are common issues brought up in this context, and these greater social issues either prevent health care access or negatively impact health outcomes. While these issues are discussed more often, they are rarely integrated into the fabric of organizations or models of healthcare delivery. This is no easy task, since these social issues are complex and oftentimes overwhelming. How can healthcare organizations seriously grabble with poverty, discrimination, and other social determinants while taking care of the individuals that live in these realities?

I believe BOOM!Health is answering that question, with a BOOM!

BOOM!Health is located in the South Bronx, the poorest congressional district in the country. We serve some of the most vulnerable populations in the country - active injection drug users, homeless individuals, LGBT youth and adults, people living with HIV, AIDS, and HCV, and many others. The Bronx itself has some of the highest rates of a range of diseases in New York City and the country, and because of its high rates of multiple diseases, the zip code 10457 is even nicknamed “disease alley.” Because of these sobering facts, understanding these social determinants of health is unavoidable.

This reality is also reflected in the lives of our participants. Laundry, showers, food, and clothing are the most widely accessed services by the over 12,000 participants we see annually. Housing, jobs, and food insecurity are cited as the main concerns our participants have, and we know through our growing health coordination services that if these basic needs are not addressed, health and other supportive services fall to the wayside.

BOOM! Health has been working to address a variety of problems plaguing the New York City region and bringing care to those in need.

The challenges are complex, and BOOM!Health’s model is designed to address them head on because of what is at the center of everything we do: the participant. Our service model works to actively remove these barriers to health care access and preventative services while supporting clients and program participants on their journey towards wellness and self-sufficiency. We offer a full range of prevention, syringe access, health coordination, behavioral health, housing, legal, advocacy and wellness services to our participants. And if we don’t have expertise or capacity in a particular service area that we know our participants need, we find people that do. But instead of just building referral networks, we bring the experts to our participants.

At our Harm Reduction Center, which sees the majority of our former and active injection drug users, we have co-located primary care services with HELP/PSI and a pharmacy with Evers Pharmacy, which is now branded as BOOM!Pharmacy. At our brand new Wellness Center scheduled to open this summer, we will have co-located LGBT-focused primary care services with Callen-Lorde Community Health Center, the premier LGBT healthcare organization in the country. These meaningful partnerships have enabled BOOM!Health to become a growing one stop shop, so that we can ensure that our participants are being treated humanely and that they get exactly what the need in order to reach health and self-sufficiency.

But services alone will not solve these issues. Our advocacy model, informed by the lives of our participants, seeks to address the reasons why so many need the services we offer. We participate in advocacy related to LGBT discrimination, drug prohibition, harm reduction, intimate partner violence, criminalization, health care access, and many other issues that would fall under “the social determinants of health.” Even though it is rare for a health organization to also engage in advocacy, it is absolutely essential if we are to make any real and sustainable progress on the health problems that many folks face in the Bronx and beyond.

For more information on BOOM!Health, visit, or you can email me at


Wednesday, January 21, 2015

A New Patient-Centric HIV/HCV Co-Infection Resource

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

The ADAP Advocacy Association (aaa+®) has long been concerned about the emerging public health epidemic facing people co-infected with HIV/AIDS and Hepatitis C (HCV). In fact, our organization was among the first to convene a national dialogue to identify some of the programmatic changes, improvements and reforms that could improve access to care for patients living with both HIV-infection and HCV-infection, including leveraging the AIDS Drug Assistance Program (ADAP) to better serve the needs of the consumers/clients. 

People living with HIV infection are disproportionately affected by viral hepatitis; about one- third of HIV-infected people are co-infected with HCV which can cause long-term (chronic) illness and death. HCV progresses faster among people living with HIV infection and people who are infected with both viruses experience greater liver-related health problems than those who do not have HIV infection. Although antiretroviral therapy has extended the life expectancy of people living with HIV infection, liver disease—much of which is related to HCV has become the leading cause of non-AIDS-related deaths among this population.

The Final Report from our HIV/HCV Co-Infection Summit is available online. The Community Access National Network (CANN) was our collaborative partner for the summit, and now CANN is delivering a much-needed patient-centric outcome from it.

On January 15, 2015, CANN announced that it had launched a new flagship program called the “HIV/HCV Co-Infection Watch,” designed to monitor relevant information and trends relating to HIV/HCV co-infection. 

The HIV/HCV Co-Infection Watch will monitor the following items:

AIDS Drug Assistance Programs (ADAPs) covering HCV treatments.
Medicaid programs covering HCV treatments.
Number of total co-infected patients per state.
Number of new co-infected patients per state.
Morbidity statistics per state.
CDC Surveillance.
Public and private insurance barriers to accessing HCV treatments.
Other miscellaneous issues as they arise.

In the most recent blog post of the "Hepatitis: Education, Advocacy & Leadership" (HEAL) coalition, which is a project of the Community Access National Network, the need behind the new resource is explained. Whereas there are resources that currently exist for some of the Co-Infection Watch's objectives, not all, and certainly not all in a centralized location from a patient-centric point-of-view.

Whether it is our very own flagship program, the ADAP.Directory, or the National Alliance of State & Territorial AIDS Director's (NASTAD) National ADAP Monitoring Report, or CANN's existing Medicaid Watch, it is imperative that all stakeholders -- including patients -- have the necessary information, resources and tools needed for effective advocacy.