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

Monday, June 2, 2014

Ordinary people doing extraordinary things...

It is that time again, when ordinary people are recognized for doing extraordinary things! On May 27th, a Call for Nominations was issued by the ADAP Advocacy Association for its 2014 Annual ADAP Leadership Awards. Now in its 4th year, these awards are designed to recognize individual, community, government and corporate leaders who are working to improve access to care and treatment under the AIDS Drug Assistance Programs (ADAPs).

Image of an ADAP Leadership Award
This year's awards will be presented on Monday, August 5th during the ADAP Advocacy Association's 7th Annual Conference, being held at the Westin Washington City Center in Washington, DC. People living with HIV/AIDS have described the event has uplighting. Advocates have said the event reminded them of why they fight the good fight against the disease. There are some good laughs; there are definitely a lot of tears!

Bill Arnold, President & CEO of the Community Access National Network (CANN) and co-chair of the aaa+® board of directors said this about last year's event: “But one memorable highlight for many of us who have been doing this work for a long time was presenting former governor and HHS secretary Tommy Thompson with our Lifetime Achievement Award. His acceptance speech reminded everyone why we do this work for a living.” 

A Call for Nominations has been issued 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
CLICK HERE to nominate a colleague, or submit a nomination to recognize an organization.

CLICK HERE to purchase a ticket to the awards dinner.

Friday, May 23, 2014

Patient Access Network Foundation – A Free Financial Resource for Underinsured Patients

By Amy Niles
Director of Patient Advocacy and Professional Relations, Patient Access Network (PAN) Foundation

For thousands of patients diagnosed with cancer and chronic illnesses, one of the first questions regarding their treatment and quality of life is, “How will I pay for this?” Patients who have been just getting by or even those who consider themselves fully financially stable often find themselves unable to afford the out-of-pocket costs associated with their prescribed medications. For many, the Patient Access Network (PAN) Foundation may be able to help.

Founded in 2004, the PAN Foundation is a nationwide, independent nonprofit dedicated to providing financial assistance to underinsured patients, or patients who have insurance but still face financial hardship in affording complex specialty medications. PAN has provided nearly $400 million in assistance to more than 250,000 patients across our nearly 60 disease-specific programs including a program for patients living with HIV/AIDS.

Patient Access Network (PAN) foundation

What is PAN assistance?
PAN provides grants to qualifying patients to help pay for the out-of-pocket portions of their qualifying medication costs. There is no cost to the patient or their healthcare provider to receive assistance from PAN. Once a patient is approved, PAN allocates a certain amount of money, $500-$10,000 varying by disease, that patients have access to for 12 months. When a patient receives a treatment or medication, their healthcare provider or specialty pharmacy submits a claim to PAN for the co-pay or coinsurance amount not covered by the patient’s insurance – allowing patients the peace of mind to continue their therapy without worrying about submitting reimbursement claims to PAN. PAN also features what we call a 90-day look-back, which means if a patient has incurred qualifying expenses at any time during the 90-days prior to their grant approval, PAN will reimburse them directly through their grant.

Who can qualify for PAN assistance?
PAN eligibility is often far more generous than most charity-care type programs, as we understand that the cost of specialty medications can be a burden even for those well above the poverty level.  While criteria vary per disease-specific program, generally patients with household incomes at or below 400-500% of the federal poverty level ($62,920-78,650 for a family of two) are eligible to receive assistance. Patients must be insured and some programs require that patients have Medicare insurance. Patients must be diagnosed with one of the nearly 60 diseases for which PAN operates a program and must reside and receive treatment in the United States. Assistance is only available for mediations that treat the disease directly.

What assistance is available for patients living with HIV/AIDS?
Patients with HIV/AIDS can receive $4,000 per year to assist with the out-of-pocket costs associated with their medications. To qualify for assistance:

  • A patient must be insured and insurance must cover the medication for which patient seeks assistance.
  • A patient must reside and receive treatment in the U.S.
  • The patient’s income must be at or below 500% of the Federal Poverty Level ($78,650 for a family of two).

How to apply for PAN assistance:
PAN has developed multiple application routes, all delivering patients’ eligibility determinations in under one minute, so patients know instantly whether they have been approved for assistance.

  • To apply online, visit and select “Online Application.”
  • To apply over the phone, call 866-316-PANF (7263). Representatives are available 9:00 am to 5:00 pm eastern time.
  • Physicians and Specialty Pharmacists have access online portals where they may apply on behalf of patients and manage their grant and claims electronically. 

To learn more about Patient Access Network and PAN’s assistance programs, visit