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.

Monday, December 22, 2014

AIDS Awareness in the Era of Anti-retrovirals, Obamacare, PrEP & Social Media

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

On Monday, December 1st millions of football fans around the world were reminded of an important message during one of the most celebrated sports traditions on television: AIDS Activism is Alive in 2014!

Over 11 million viewers among the key 18-49 ratings demographic during the game saw Bank of America's (Red) TV Spot, 'One Step Closer,' featuring Bono. That number doesn't even reflect other demographics, or the number of people who have subsequently viewed the 30-second spot online.

Although the number of deaths in the United States, and elsewhere around the globe, has dramatically decreased with the advent of high-active anti-retroviral treatments (HAART) the need remains to educate people about HIV/AIDS. Bono states in the 'One Step Closer' spot that America has brought "this pandemic nearly to its knees." He is right, but all stakeholders in the fight against HIV/AIDS must re-commit themselves to this important struggle.

Some might argue that with the passage of the Affordable Care Act, or Obamacare, there is less cause for alarm because more people now have access to affordable health care. I disagree. There are emerging issues under the law that appear to disproportionately impact people living with long-term, chronic diseases such as HIV/AIDS. What played out with Blue Cross Blue Shield of Louisiana is evidence of what potentially lurks ahead. Fortunately for people living with HIV/AIDS, such as John East and others in Louisiana, organizations like Lambda Legal are fighting the good fight.

Medicaid expansion is important, but not the be-all, end-all solution. More and more doctors - especially specialty care physicians - are no longer accepting Medicaid assignment. The reimbursement rates are simply too low. That potentially leaves many patients with access to insurance, but they still cannot access the health care afforded to them. The uneven rollout of Medicaid expansion poses an entirely different set of issues.

The good news is there is still plenty of energy left in the fight against HIV/AIDS.

Even the ongoing debate over Pre-Exposure Prophylaxis, or PrEP, demonstrates that the passion within the HIV/AIDS community that once led to the Denver Principles is alive and well. Proponents and opponents of PrEP equally have sound arguments to support their respective positions. The community, however, should be mindful not to cut off its nose to spite its face, as the saying goes!

Today, we have new tools at our disposal that were unimaginable when the AIDS epidemic first appeared in the early 1980s. Wanda Brendle-Moss in North Carolina is leveraging Twitter (@WandaBrendleMos) every single day to spread the twin gospels of prevention and treatment. Patrick Ingram in Virginia and Aaron Laxton in Missouri are leveraging YouTube to educate people about HIV/AIDS. The Positive Women's Network (PWN), is unifying the voices of women impacted by this disease on a national level that serves as a model for self-advocacy.

HIV/AIDS might be down, but it certainly is not out for the count. Only by working together will be 'one step closer' to ending AIDS!

Editor's Note: This blog was originally published in the NeedyMeds December monthly newsletter.

Thursday, November 13, 2014

How does ADAP look under the Affordable Care Act?

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

Over the last year, one of the most frequently asked questions by people living with HIV/AIDS, public policy advocates, representatives from the health care and pharmaceutical industries and others, "What is the future of the AIDS Drug Assistance Program now that the Affordable Care Act is law?"

The answer is simple: It is too early to know for certain!

At first glance, data trends suggest that the passage of the ACA and its subsequent implementation has not slowed down client enrollment in ADAPs nationwide. According to the "National ADAP Monitoring Project - Annual Report," published by the National Alliance of State & Territorial AIDS Directors (NASTAD), client enrollment increased by over 15,000 between 2012 and 2013, or about an 8% increase. Last year, over 210,000 people living with HIV/AIDS were enrolled in ADAP. [1]

ADAP Client Enrollment, June 2003-2013
Chart: ADAP Client Enrollment, June 2003-2013

Not surprisingly, California has the largest statewide enrollment, with 22,702 clients, followed by New York with 17,193 clients, and Florida with 14,058 clients. Over sixty percent (97,142 clients) of the total clients served by ADAP were served by the top ten states -- including Texas, Puerto Rico, Illinois, North Carolina, Georgia, New Jersey and Pennsylvania). [2]

ADAP Clients Served and Top Ten States, by Clients Served, June 2013
Chart: ADAP Clients Served and Top Ten States, by Clients Served, June 2013

One of the consistent themes heard at our 2014 Summit ("Intersection between ACA & ADAP") and 2014 Annual Conference ("Future of the AIDS Drug Assistance Program") was without concrete data, it is premature to make any assumptions about the Ryan White CARE Act, in general, and the AIDS Drug Assistance Programs, specifically. Another message that was fairly consistent, there is a significant disconnect between the advocacy work being done on Capitol Hill and the boots on the ground in local communities. It is also ill-advised to open-up the Ryan White law until we can better evaluate the intersection with the ACA, as well as the future of ADAP!

Clearly, ADAPs will remain a vital safety net for thousands of people living with HIV/AIDS next year and into the foreseeable future.

Probably one of the biggest unknown variables is the ongoing Medicaid expansion. "Spotty" is probably the best word to describe whether states are exercising the option to expand their Medicaid programs. Not surprisingly, some of the most resistance has come from southern states controlled by Republican Governors, or Republican State Legislatures.

Where the States Stand on Medicaid Expansion
Where the States Stand on Medicaid Expansion
To check out the most up-to-date information about state-by-state efforts to expand Medicaid, visit

Another added variable is the recent Republican electoral wave. Whereas some pragmatic Republican legislators have moved beyond the "Repeal & Replace" chatter about Obamacare, there remain plenty of hard-liners who wish to do away with the law, or at least strip it of some major provisions. It is clearly too early to tell, but President Obama's veto pen is probably the law's best defense.

The ACA is also fueling new challenges for people living with HIV/AIDS; among them, emerging discriminatory practices. Monitoring these trends is an essential responsibility for all ADAP stakeholders. (Editor's Note: CLICK HERE to register for a free webinar, "Update on ACA Discriminatory Marketplace Exchange Practices")

One thing is abundantly clear in this conversation, and that is nothing is clear whatsoever. There are so many moving parts that could potentially impact the access to care for people living with HIV/AIDS.

[1] NASTAD, National ADAP Monitoring Project Annual Report, February 2014, Chart 10, Page 13.
[2] NASTAD National ADAP Monitoring Project Annual Report - February 2014, Chart 12, Page 14.

Thursday, October 30, 2014

Black Market HIV/AIDS Medications

By: Jim Dahl, Board Member, Partnership for Safe Medicines (PSM)

Almost since there were HIV/AIDS treatments, unlicensed distributors have been selling dangerous black market medications to American pharmacies, unscrupulous secondary wholesale distributors, and patients. Since 2006 at least 86 individuals have been charged with distributing HIV and AIDS medicines in the United States. These cases are just the tip of the iceberg.

The United States has the safest drug supply in the world. The FDA and licensing programs in individual states ensure that every entity in the American drug supply chain is answerable to a regulator. Companies that sell drugs outside of the FDA-approved drug supply are not accountable to the FDA, state licensing boards or anyone. Counterfeiters substitute cheap ingredients, offer medicines in unfamiliar doses and omit instructions and safety warnings. Their medicine may contain harmful chemicals or contaminants; it may contain no active ingredients at all. Counterfeiters are canny marketers. Their websites are very convincing, but they sell medicines that may be expired, contaminated, diluted or damaged during shipping. Patients who buy these drugs risk taking substandard medicines, and substandard medicines lead to higher viral loads, poor health and drug resistance, even if patients are conscientious about their drug regimen.

These aren't hypothetical risks.

In 2000, university professor Rick Roberts learned that the Serostim he had been taking to treat HIV wasting syndrome was counterfeit. The fake Serostim had made its way to his pharmacy via unlicensed distributors that had forged documentation to make it look legitimate. Roberts eventually recovered his health, but one child—a brain cancer survivor—suffered developmental and growth delays after being treated with another growth hormone being sold by these groups.

AIDS Red Ribbon next to a spoon full of pills

Since 2012, investigators have uncovered diversion of HIV/AIDS medicines on a massive scale. Customers of New York branches of MOMS Pharmacy were prescribed $274 million in second hand, stolen or expired HIV treatments. The FBI seized more than 33,000 bottles of second hand AIDS, asthma and schizophrenia drugs and 250,000 loose pills from drug diverters in New York. A Texas-based company called Cumberland Distribution sold $58 million in HIV/AIDS, antipsychotics and diabetes treatments to pharmacies. Their sources had acquired the drugs from “street level drug diverters.”

In late 2005 after just retiring as Assistant Director of FDA’s Office of Criminal Investigation (OCI), I testified before a House Subcommittee that in my time at the agency I hadn’t seen a counterfeit drug get into the otherwise legitimate supply chain without the aid of a pre-existing diversion infrastructure.  I’m confident the same can be said today. Diverted drugs are not only unreliable but drug diversion poses an additional risk. Addicts who resell their medication are often selling vials they have already used. It is standard practice to take a dose of an IV drug and replace the missing contents with water using the same syringe. As many as 30,000 have been exposed to hepatitis C as a result of diversion in hospital settings since 2004; who knows what the exposure rate has been from black market injectables?

In the face of this threat, we must give patients the tools to be safe.

Patients need strategies to save money safely. Counsel them to adopt generics when they are appropriate. Let them know that they can comparison shop online for the lowest prices for safe, licensed online pharmacies at and compare prices at their neighborhood pharmacies on websites such as, and If they are un- or under-insured, be sure they know about cards like the NeedyMeds Drug Discount Card, and direct them to prescription assistance program resources at NeedyMeds and the Partnership for Prescription Assistance.

Patients need to know how to spot questionable drugs. In medical settings, they should examine drug packaging to verify that it is in good condition and that its labeling is accurate and in English, and keep a record of the medicine lot number. At home, they should verify that their medicine's packaging is clean and correctly sealed, with instructions in English, and that new medication has the same packaging as past medication, with no differences in paper, printing, color or fonts. Patients should also examine the appearance of medicine; if it looks chipped or cracked, or different from earlier prescriptions, it may be fake.

Finally, patients and medical professionals should be alert to the possibility that a patient's treatment may not be working because the medication itself is compromised. Changes to the way a medicine tastes, new side effects or adverse effects and failure of treatment might signal changes to a drug.

If there's any question about whether a drug is counterfeit, patients should contact the pharmacy where they purchased their medicine. Patients and medical professionals can contact the FDA and the manufacturer of the medication to report concerns. The FDA can be contacted by calling toll-free 1-800-FDA-1088 (800-332-1088), or on the Web at

Thursday, October 2, 2014

The Difficulty in Scoring Gridlock

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

The ADAP Advocacy Association (aaa+) has published its annual Congressional Scorecard between 2009--2012, evaluating Members of Congress on their support of the AIDS Drug Assistance Programs (ADAP). The 2012 Scorecard, however, will be the last published ranking on congressional activity.

Cartoon of the U.S. Capitol, with cars gridlocked in front of it.
Source: ASPA National Weblog
Simply put: it is too difficult to score gridlock. There was a time that the two major political parties could hold serious policy disagreements on the issues facing the nation...including on HIV/AIDS. Unfortunately that is no longer the case.

Whether it is Republicans controlling the majority (as in the U.S. House of Representatives), or the Democrats in the U.S. Senate, policy disagreements have succumb to political posturing. BOTH sides are equally to blame, and anyone suggesting otherwise is simply blinded by personal politics. The (legitimate) news media, establishment political class, and the general public all agree on this point.

There are 34 days until the upcoming midterm congressional elections, but it is obvious that the next election will immediately begin hours after the votes are cast this year...regardless of the outcome. Therein lies the true problem, nothing is getting done in Washington because both the Republicans and Democrats are more worried about public polling polls, focus group results and the potential backlash from making tough decisions. Things only appear to be getting worse, too!

Whereas programs like the Ryan White CARE Act--which includes ADAP--continue to enjoy strong bipartisan support, it is overshadowed by the ongoing broader cantankerous debate over the Affordable Care Act, or Obamacare. One political party insists that it will be the end of the Republic (even one potential presidential candidate had the audacity to say it is worse than slavery, the Holocaust and 9/11). The other political party has completely buried its collective head in the sand trying to ignore the emerging...and very real...unintended consequences surrounding the law. There is no middle ground, it seems.

When the ADAP Advocacy Association's Congressional Scorecard was initially published, it proved to be an important tool...among many help educate patients on how the nation's leaders were addressing HIV/AIDS in this country. Many people living with HIV/AIDS and policy advocates applauded the report card because it helped them to make informed decisions. But now there is no leadership on Capitol Hill.

That's not to say that there aren't congressional leaders in the fight against HIV/AIDS!!! Quite the contrary. The Congressional HIV/AIDS Caucus--under the leadership of Rep. Barbara Lee (D-CA), Rep. Jim McDermott (D-WA) and Rep. Ileana Ros-Lehtinen (R-FL)--has assembled over 70 Members of Congress to ensure that HIV/AIDS issues remain on the table. Their bipartisan commitment to the fight against HIV/AIDS is unquestionable.

To learn more about the Congressional HIV/AIDS Caucus, go to