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

Thursday, September 11, 2014

Shifting Landscape of HIV Housing & its Impact on Healthcare

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

For people living with HIV/AIDS, there is probably only one thing that is more important to them than access to affordable healthcare and treatment: housing. But like healthcare, housing has to be affordable otherwise it provides little relief for the people who are trying to manage the chronic nature of their condition.

In 2012, Priced Out in 2012 -- which was released by the Technical Assistance Collaborative (TAC) and the CCD Housing Task Force -- documents how affordable housing is often unattainable for people with disabilities, including people living with HIV/AIDS. The report concluded, "...non-elderly adults with disabilities living on Social Security Income confront an enormous housing affordability gap across the entire nation."

Priced Out in 2012
The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force have released a study, Priced Out in 2012, which demonstrates that the national average rent for a modestly priced one-bedroom apartment is greater than the entire Supplemental Security Income (SSI) of a person with a disability.

Whereas Priced Out in 2012 focused on the U.S. Department of Housing & Urban Development's (HUD) Section 811 program, there exists sufficient parallel with HUD's Housing Opportunities for People with AIDS (HOPWA) program. HOPWA is the only Federal program dedicated to the housing needs of people living with HIV/AIDS, benefiting low-income persons living with HIV/AIDS and their families. [1]

Affordable housing may be the most important factor for successful medical outcomes for those living with HIV/AIDS. To that end, HOPWA is a critical program to help people living with HIV/AIDS with stable affordable housing that isn’t available in mainstream housing programs.

The Obama administration has proposed significant changes in the HOPWA legislation. Additionally, there are plans by HUD to move the HIV/AIDS housing office under the umbrella of the massive homeless programs. Those proposed changes have been met with some concern, but even more unanswered questions by stakeholders about the impact on people living with HIV/AIDS.

In response, HUD issued the following statement:

"The Department’s FY 2015 HOPWA congressional budget justification includes a legislative proposal to change the formula and to expand the provision of short-term housing assistance. Congressional action is required prior to enactment of the proposal, as the HOPWA statute must be amended to enable the use of living HIV cases. This is due to the existing statutory language referring only to cumulative AIDS cases for purposes of providing formula grant awards. As such, the purpose of this notification to dispel any misunderstanding regarding the status of this legislative request since it remains a proposed action. In fact, the Department has previously submitted the legislative request in the FY 2013 and FY 2014 HOPWA budget requests without congressional action." [2]

A coalition of housing organizations have been closely monitoring the HOPWA Modernization proposal, including the National AIDS Housing Coalition (NAHC), Southern AIDS Coalition, Housing Works, AIDS Alabama, HIV Prevention Justice Alliance, and many others. These organizations have convened meetings, hosted workshops and gathered important community input.

As part of the ADAP Advocacy Association's ongoing commitment to the principles of the Housing is Healthcare, ADAP stakeholders are encouraged to register for its free webinar: Shifting Landscape of HIV Housing & its Impact on Healthcare. The webinar, which will be held on Thursday, October 23rd, is FREE to all stakeholders.

This webinar will explain the proposed changes and how they will impact people living with HIV/AIDS who need housing, including how it might undermine the Housing is Healthcare paradigm.

CLICK HERE to register for the webinar, Shifting Landscape of HIV Housing & its Impact on Healthcare.

[1] U.S. Department of Housing & Urban Development. HUD Exchange. Housing Opportunities for People with AIDS. 2014.
[2] U.S. Department of Housing & Urban Development. HUD Exchange. Update on the Status of the Proposed HOPWA Formula Change. June 23, 2014.

Friday, August 8, 2014

The ADAP Directory Puts the Right People in Control: PATIENTS

Newly diagnosed with HIV-infection, and need assistance with your medications?

Already living with HIV/AIDS, and thinking about moving to another state but uncertain if you'll lose your medication assistance?

Recently unemployed or lost your health insurance coverage, and need assistance for your HIV medications?

There is a new tool to help patients living with HIV/AIDS learn more about the AIDS Drug Assistance Program (ADAP), which exists in all 50 U.S. States and the 6 U.S. Territories. The tool puts patients in control of their own healthcare decisions.

The ADAP Advocacy Association launched its comprehensive ADAP Directory earlier this week at the opening ceremony of its 7th Annual Conference in Washington, DC. The ADAP Directory is its groundbreaking flagship program, made possible by generous support from AbbVie, Merck, and Walgreens.

The ADAP Directory: The ADAP Directory is a convenient online resource to locate AIDS Drugs Assistance Program information for all US states and territories.

The ADAP Directory is a new, innovative approach to ensure 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; and
Uniform presentation of ADAP information for effective advocacy and easy dissemination.

The “Perfect Storm” that had befallen the cash-strapped ADAPs exposed some very real deficiencies in the amount and quality of information made readily available to patients living with HIV/AIDS. As of July 28th, ADAP waiting lists still existed in one state, with 35 people in Utah being denied access to care and treatment.

While these numbers are nowhere near as high as they were during the last ADAP crisis, they still demonstrate the need for better linkages to care. In addition, these numbers don’t even accurately reflect the scope of the crisis, because hundreds more have been dis-enrolled and there have been numerous other cost containment measures adopted that all have resulted in restricted access to care – including capped enrollment, reduced formularies, implemented medical criteria, instituted monthly expenditure cap, discontinued reimbursement of laboratory assays, instituted annual expenditure cap, and instituted client cost-sharing

"As woman living out loud with HIV/AIDS, and an awesomely proud member North Carolina's ADAP advocacy community, I firmly support the ADAP Directory because it is long-overdue," summarized Wanda Brendle-Moss, who received the ADAP Advocacy Association's "ADAP Emerging Leader of the Year Award. "It is an ADAP advocacy dream tool!"

There currently exists only a “patch-work” of relevant information accessible to patients, so the ADAP Directory is a groundbreaking initiative. It serves a one-stop online resource center to assist social workers, patient advocates and medical practitioners – but more importantly, it will provide patients with the necessary resources and tools to become more active decision-makers with their care.

“The ADAP Directory puts patients in the driver’s seat by linking them to the relevant information about all 56 ADAPs, as well as useful resources and tools,” stated Brandon Macsata, CEO of the ADAP Advocacy Association. “Patients deserve new, innovative approaches to linking them to the information, resources, medical care and the treatment options that will keep them healthy, productive members in their communities.”

Learn more about the ADAP Directory: