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:

Thursday, July 17, 2014

ADAP Cost Containment Measures Undermine Patient Care

According to the National Alliance of State & Territorial AIDS Directors (NASTAD) and its most recent ADAP Watch, there are ten State AIDS Drug Assistance Programs (ADAPs) with cost-containment measures in place since April 1, 2013 (reported as of April 7, 2014). More cost-containment measures might be coming, too. For patients, these cost containment measures amount to being denied access to timely, appropriate health care. Nothing more; nothing less!

During the "Perfect Storm" that besieged ADAPs nationwide between 2008-2013, especially in the southern states, most of the HIV/AIDS advocacy community concentrated on eliminating the record high waiting lists. At their peak, ADAP waiting lists reached approximately 10,000 patients across a dozen states. Whereas at the time the dilemma was certainly embarrassing for states like Florida...which witnessed its program basically fall galvanized the HIV/AIDS advocacy community.

National leadership was spearheaded by AIDS Healthcare Foundation, Housing Works, NASTAD, Community Access National Network, The AIDS Institute, HealthHIV, and many, many other organizations. The national efforts were surpassed by the advocacy efforts at the state level, including notable grassroots advocacy led by AIDS Alabama, Florida HIV/AIDS Advocacy Network (FHAAN), AIDS Foundation of Chicago and Georgia Equality, just to name a few.

Even though that collective leadership paid off, evidenced by ADAP waiting lists being down to 12 individuals in one state (Utah), it is still needed today. It is needed to eliminate the remaining cost containment measures.

Reduced drug formularies, restricted financial eligibility, monthly expenditure caps and cost-sharing are only some of the cost containment measures, but they're equally as dangerous as ADAP waiting lists. The ADAP Advocacy Association warned about the "tip of the iceberg" and that warning remains today!

These remaining ADAP cost containment measures undermine patient care, and the HIV/AIDS advocacy community must vigilant to ensure that every patient is afforded access to health care.


Wednesday, June 25, 2014

Never Miss a Dose: The Vital Importance of Treatment When You Have HIV-Infection

By Leslie Vandever, guest blogger

Your body’s tough. Its immune system produces protective T (thymus) cells to fight off infection by viruses, bacteria, and other foreign invaders from outside. Your T-cells step up and squash these malicious invaders before they can wreak havoc and make you sick.

But the human immunodeficiency virus, or HIV, specifically goes after and kills T-cells. In time, it kills off so many that there aren’t enough left to fight off the usual infections and diseases we’re all exposed to every day. The result is AIDS—acquired immunodeficiency syndrome.

When you have AIDS, you can get very sick, very quickly. Overcoming each illness requires monumental effort, and each battle leaves your body weaker. Eventually, one or more diseases or infections take over. Weakened and unable to fight back, you’ll die.

That’s the bleak truth about HIV/AIDS. But it doesn’t have to be that way.

So far, medical science hasn’t been able to find a cure for HIV, but antiretroviral treatments (ARVs) inhibit the virus in a number of ways, including its ability to reproduce. ARVs keep your “viral load” under control and your T-cells numerous enough to protect you from other viruses and diseases.

And that’s why it’s so important for you to take your HIV medications exactly as prescribed. Even a single missed dose can allow HIV to replicate and function better, making it that much harder for the ARV to bring it back under control. If you periodically skip doses or stop taking the medication temporarily, you’re setting your body up for AIDS.

Medication non-compliance is a well-known, widespread problem.

Open pill bottle next to an alarm clock

Missing medication doses or messing them up can happen to anyone, not just patients living with HIV-infection. Sometimes taking a dose is inconvenient—we’re not near a water source, or we’re otherwise occupied at the time we should be taking them and then forget to take them later. We’re all human. It happens.

Other reasons for ARV non-compliance are more complicated—and potentially more serious. According to a paper published in the peer-reviewed journal LGBT Health, mental health issues like depression, and substance abuse—particularly alcohol and crystal methamphetamine—are prevalent among gay, LGBT, bisexual and other men who have sex with men (MSM). They can  have a profound and disastrous effect on an individual’s ability to stick to ARVs.

Just getting through each day can be a huge challenge if you’re suffering from depression, anxiety disorder, or post-traumatic stress disorder (PTSD). The mind detaches from normal reasoning. It means that taking medication requiring complicated, closely timed dosing, while not impossible, can be close to it.

Drug and alcohol abuse scrambles the mind and reality—and here, too, adhering to a medication schedule becomes extremely difficult. Addiction to the abused substance further complicates the problem.

If you are living with HIV-infection, ARV non-compliance can have deadly consequences. Here are some tips to help make taking your meds easier:

  • Understand what you’re taking. Have your health care provider write down the names of your medications, what each of them looks like, and when and how often you need to take them. Keep this info handy for easy reference.
  • Get pillboxes that hold a week’s worth of doses, divided into different times of the day (morning, noon, night, for instance). Fill them at the beginning of each week.
  • Plan for changes in your regular routine, such as vacations or evenings out.
  • Make sure you always have enough medicine. Refill bottles as soon as you’re able.
  • Take your medicines at the same time each day to make taking them a habit.
  • If your meds are causing side-effects that make it hard for you to take them, talk to your provider ASAP. They may be able to change the med or suggest ways to cope with the side-effect that helps you comply with dosing.
  • If you’re experiencing mental health issues or abusing drugs or alcohol, seek help.

Having HIV-infection is no longer a death sentence. But staying well requires medication, discipline and an understanding of the disease and how it’s treated. Talk to your provider if you have questions.

Leslie Vandever is a professional journalist and freelance writer with more than 25 years of experience. She lives in the foothills of Northern California where she writes for Healthline.

A Timeline of AIDD. (n.d.) U.S. Department of Health and Human Services. Retrieved on June 2, 2014 from
About HIV/AIDS. (2014, Feb. 12) Centers for Disease Control and Prevention. Retrieved on June 3, 2014 from
Medication Adherence. (2009, Aug. 9) U.S. Department of Health and Human Services. Retrieved on June 3, 2014 from
Adherence. (n.d.) New Mexico AIDS Education and Training Center. National Library of Medicine. Retrieved on June 3, 2014 from
White, J. M., et al. The Role of Substance Use and Mental Health Problems in Medication Adherence Among HIV-Infected MSM. (2014, June 6) LGBT Health. Retrieved on June 18, 2014 from