Wednesday, December 16, 2015

Florida Solution: Prescription Freedom Act of 2016

By: David W. Poole, Director of Legislative Affairs, Southern Bureau, AIDS Healthcare Foundation

Mandate, Mitigate, and Manage, perhaps the 3 M’s are the most overused verbs tossed around regularly and often throughout our vast and complex healthcare systems, all in the spirit of optimal outcomes for the patient, right?  Perhaps some of the time. Hopefully patient outcomes are core to all parts of our healthcare universe – which includes hospitals, pharmacies/specialty pharmacies, outpatient surgery centers, home health care,  rehabilitation centers, manufacturers, insurers, wholesalers, and the list goes on and on. Patient outcome language was certainly integrated into the Patient Protection and Affordable Care Act, “PPACA” or the often shortened “ACA.” And the Ryan White legislation throughout its now 25 year history has long since included patient health outcomes as an expectation for grantees managing this very important safety net for person living with HIV disease.

Medical claim form with a "DENIED" stamp on it
Photo Source: optimistically pessimistic

But what about the “C” word, CHOICE or the “F” word, FREEDOM. Choice and the freedom to choose should be at the real heart of our continuum of care – choice or options that facilitate optimal health care outcomes. And if you have optimal health outcomes shouldn’t the economic benefits follow. Choice is the enemy of barriers to access (which can include the 3 M’s),  both purposeful and unintentional. Choice and freedom are the best friends to individualism – what works for one patient doesn’t work for the next patient, thus having choice and the freedom to choose what works - serves the patient and all health care stakeholders in the best possible way.

You may be surprised to learn that your health care systems deprive you of the freedom to choose the option that serves you best and none is more glaring than many insurer mandated mail order policies. These policies can take many different forms with nuances too numerous to cite; however, two lawmakers in Florida have filed legislation for 2016 that will hopefully reverse this trend with persons living with HIV, Epilepsy, Diabetes and Hypertension. Senator Rene Garcia (R-Hialeah) and Representative Debbie Mayfield (R-Vero Beach) have filed Senate Bill 780 and House Bill 583, "The Prescription Freedom Act." These bills simply provide for patient choice of receiving their medications through a brick and mortar pharmacy or a mail order program – the insurer must not mandate that a patient access their medications from only one or the other and there cannot be financial advantage or leverage assigned to one over the other for the patient or for the insurer. Let freedom ring in health care choices and may options be abundant!

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Thursday, December 3, 2015

It's Time to End Bad HIV Laws!

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

The ADAP Advocacy Association applauds the efforts of the Human Rights Campaign (HRC) to combat HIV-related criminalization laws with the launch of their new national public education campaign, "It's Time to End Bad HIV Laws!" A new microsite,, is headlined by an informative and passionate video showcasing Marvell Terry II. Terry makes the compelling case against these outdated and unfair laws targeting people simply for their HIV status.

The HRC national public education campaign was launched in partnership with the National Center for Lesbian Rights (NCLR) and the Center for HIV Law and Policy (CHLP). Whereas the video addresses the 30 states with outdated HIV-related criminalization laws, its messages applies to the stigma experienced by people living with HIV/AIDS nationwide.

Screenshot of the HRC video, showing 30 hashmarks to indicate the number of states with HIV-related criminalization laws.
It's Time to End Bad HIV Laws
On YouTube, there have been nearly 30,000 views in just a few short days. To watch the video on YouTube, go to

The Human Rights Campaign's Senior Specialist for HIV Prevention & Health Equity, Noël Gordon summarized: "We are closer than we've ever been to turning the page on the domestic HIV & AIDS epidemic. But HIV criminalization laws continue to undermine that progress, especially among LGBTQ communities of color. HRC launched this campaign - in collaboration with the Center for HIV Law & Policy and the National Center for Lesbian Rights - to shine a spotlight on these outdated laws and to build public support for addressing them once and for all."

HRC is encouraging people to raise awareness about these bad laws by Tweeting using hashtag #EndBadHIVLaws!

Tweet: Check out this new anti-HIV criminalization video by @HRC - It's Time to End Bad HIV Laws!

HIV-related criminalization laws indirectly impact the delivery of supports and services under the AIDS Drug Assistance Programs (ADAPs), as well as all other programs designed to help people living with HIV/AIDS. These bad laws undermine ADAPs and the successful treatment options afforded to patients, which have resulted in better health outcomes, fewer new infections, and lower community viral load rates across the country.

Together, let's help the HRC end bad HIV laws!

CLICK HERE to read "Personal Perspective: Impact of HIV Criminalization," a 2013 blog by Robert Suttle, Assistant Director at the SERO Project and ADAP Advocacy Association board member.

Wednesday, November 25, 2015

Attention Case Managers: A Conference with You in Mind

By: Vincent Lynch, MSW, Ph.D., Founder and Chair, The Annual National Conference on Social Work and HIV/AIDS

On World AIDS Day 2015, as we consider this year’s theme of “Getting to Zero,” please take the opportunity to read here about a four-day annual national conference on psychosocial issues which may very well interest you, your colleagues and possibly your clients. The Annual National Conference on Social Work and HIV/AIDS was founded by me at Boston College in 1988 in response to the growing need expressed by case managers, social workers, client advocates and mental health professionals to develop a major annual conference where these psychosocial AIDS care providers could network and learn from each other regarding new developments in the psychological and social aspects of HIV/AIDS care. Now in its 28th year, the conference moves around the country to a different city each year and consistently draws 400-500 attendees. We typically offer over 100 presentations each year. Here are examples of just a few of the topics we address: new approaches to case management service delivery, updates on ADAP policy/program issues, other HIV policy issues including the changes in the Ryan White Program, effective strategies for treatment adherence, advocacy skill building, self-care for providers, techniques for interdisciplinary collaboration, improving services to communities of color and current medical updates.

Panelists in Photo: (left to right): Russell Bennett, MSW, Ph.D.- conference co-chair; Vincent Lynch, MSW, Ph.D.- conference founder and present chair;  Gina Brown, MSW- Planning Council Coordinator, New Orleans Regional AIDS Planning Council; Randall Russell, MSW- Board Chair, Professional Association of Social Workers in HIV/AIDS.
Panelists in Photo: (left to right): Russell Bennett, MSW, Ph.D.- conference co-chair; Vincent Lynch, MSW, Ph.D.- conference founder and present chair;  Gina Brown, MSW- Planning Council Coordinator, New Orleans Regional AIDS Planning Council; Randall Russell, MSW- Board Chair, Professional Association of Social Workers in HIV/AIDS.

A high proportion of attendees each year have the MSW degree, but by no means is that degree necessary to participate in the conference (either as a general attendee, presenter or exhibitor). Our next conference will be at the Hyatt Regency Minneapolis during May 26-29, 2016.  At present we are receiving abstracts of proposed conference presentation proposals from colleagues. I’d like to invite you to consider sending me a conference presentation abstract if you have a topic that you might wish to discuss. The official deadline for submission of presentation abstracts is December 4, 2015; however, we are willing to extend the deadline until December 21 for readers of this blogpost.

We have four presentation categories at the conference: a 90-minute poster session, 75-minute workshops; 50-minute “conversations on best practices” and 20-minute brief reports.  If you wish to submit an abstract please email it directly to me as a Word document at Just send me your title, the name(s) of the presenter(s), a 250 word summary of your topic, email address(es) for presenter(s) and your preference for what presentation category you’d like it to be considered. We’ll get it in review right away and should have a decision for you in 10-14 days as to where it might fit in the conference schedule.

We also have a special “Early-Bird” discount conference registration fee available until January 25, 2016 whereby you can save $100 on the standard conference registration fee if you register by that date. Please note: we can also waive the conference registration fee in full for persons living with HIV/AIDS and also for a limited number of colleagues who wish to serve as conference volunteers. For more details please contact me directly as my email address (noted above).

To obtain a copy of our latest flier which will provide all the information you need about our conference please go to:

We have a loyal following… many of our attendees have attended our conference multiple times. Please consider participating with your brother and sister providers of HIV/AIDS psychosocial services. I can guarantee you will meet some fascinating colleagues from around the country (and around the world!). In addition to the valuable learning you’ll be exposed to at the conference sessions, you’ll also have the chance to participate in receptions and other informal “Meet-And-Greet” opportunities. The only way we can “Get to Zero” is for all of in HIV/AIDS to unite our efforts and work together more collaboratively. I do hope to see you in Minneapolis in May where you can meet and collaborate with many others doing the same important work as you. Thank you for all the important service you provide in our common goal of fighting the epidemic. All the best.  

Thursday, November 12, 2015

Under the Gun: Mandated Mail-Order Pharmacies

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

At the heart of any successful disease management is informed consumer choice; without it, access to timely and appropriate health care services, and adherence to treatment options will likely suffer. HIV/AIDS disease management is certainly no exception. People living with HIV/AIDS must play a central role in determining their care and treatment options, which may -- or may not -- include the use of mail order pharmacy programs.

Mail-order pharmacy programs can serve an important resource for some people living with HIV/AIDS, including prescriptions delivered under the AIDS Drug Assistance Programs (ADAPs). Mandating such programs, as often is the case with some ADAPs and insurance carriers, can present numerous obstacles. Many patients and their advocates view these services as counterproductive, too.

Prescription drug bottles inside a mailed package, along with an Rx
Photo Source: MichRx Pharmacist Consulting Services, Inc

It is an issue that has routinely raised cautionary flags. So was argued in an earlier blog by Michelle J. Sherman, RPh, FASCP, AAHIVP, MichRx Pharmacist Consulting Services, Inc., "Many of these mail order pharmacies are owned and operated by the insurance company themselves. There are so many conflicts of interest in this behavior you would think the FTC [Federal Trade Commission] would put a stop to it, but instead they seem to turn a blind eye and is encouraged. In recent weeks, we have seen major insurance company mergers. Aetna spent $37 billion to buy its rival Humana; Centene spent $6.3 billion to buy Health Net and Anthem is close to a $47 billion deal to buy Cigna."

Mandating the care and treatment of any chronic disease posses numerous challenges. Among some of the most common challenges faced by patients include the potential breach of privacy, lack of oversight on negative drug interactions, lost/late shipments, and loss of face-to-face consultations with pharmacists. These challenges, as well as others, have led to several states banning, or attempting to ban the use of mandated mail order pharmacies—including Maryland, New York and Pennsylvania.

Now, Florida can be added to the mix of states aggressively tackling mandated mail-order pharmacy programs. Last week, Senator Rene Garcia (R, 38th District - Miami) and Representative Debbie Mayfield (R, 80th District - Vero Beach) filed legislation in the Florida Senate (S.B. 780) and Florida House (H.B. 583), respectively. The news was welcomed by advocates in the community.

In a statement issued by the AIDS Healthcare Foundation (AHF), David Poole, AHF’s Director of Legislative Affairs, argued, "...[T]he problem is these arrangements are often more focused on minimizing financial risk for the insurers and not focused on providing the patient or beneficiary with options that work best for the individual patient’s situation."

Bill Arnold, President & CEO of the Community Access National Network (CANN), echoed those sentiments when he summarized mandated mail-order pharmacies violate the right of every patient to choose how they wish to receive medications. He said, "The process over rules free choice for the patient, potentially exposes private health information to other present at the mail deliver site, and subverts the relationship of a patient with their local pharmacist. This relationship is  virtually important to many seniors and to many patients with life threatening and chronic diseases. The requirement fails the basic test of treating patients as American consumers.”

Most organizations, including the ADAP Advocacy Association, are not necessary opposed to mail-order pharmacy programs, but mandating that patients use these programs can pose significant barriers to care and treatment. It is paramount that patients, advocates, social workers and other stakeholders continue to monitor damaging policies, such as mandated mail-order pharmacies.

To that end, there is a free webinar being held on Wednesday, November 18th. The webinar - hosted by the ADAP Advocacy Association, and held in partnership with the Great Lakes ADA Center and the Community Access National Network - will focus on the challenges associated with mandated mail-order pharmacies. It will review three case studies, each presenting different obstacles presented by mandated mail order pharmacy programs and how best to overcome them. To register, go to

Wednesday, September 30, 2015

When Shit Hits the Fan...Daraprim Style!

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

Earlier this month, relatively few people within the healthcare community, patient advocacy movement and frankly the general public probably knew much about the drug Daraprim (pyrimethamine). Not anymore! The drug, along with the pharmaceutical company that recently purchased the rights to sell it, Turing Pharmaceuticals, was transformed into a household name overnight. A 5000% price increase can have that sort of effect.

Turing Pharmaceutical's young CEO, Martin Shkreli, didn't help his new company's PR nightmare with some of his initial comments. But it is Mr. Shkreli who will most likely be responsible for the increased scrutiny over pharmaceutical drug pricing, and the process behind it. Stakeholders -- including physicians, pharmacists, healthcare professionals, pharmaceutical companies, patients -- can have honest disagreements over the issue of drug pricing, and each side has very valid merits behind their respective arguments. What happened with the Daraprim price hike is something entirely different, and even more troubling.

Source: Business Insider
The reaction to the 5000% price hike speaks volumes, too.

The National Alliance of State & Territorial AIDS Directors (NASTAD) immediately pounced on the decision, writing a letter to the Health Resources and Services Administration's Office of Pharmacy Affairs. The NASTAD letter sounded the alarm on behalf of patients living with HIV/AIDS across the country, since the drug is commonly prescribed under the AIDS Drug Assistance Programs (ADAPs). Several ADAPs have reportedly experienced difficulty in acquiring Daraprim at the discounted 340B price.

"It is apparent that Turing has violated HRSA’s non-discrimination requirements for the 340B program, and NASTAD believes that this discriminatory restriction on purchasing at the 340B price is ongoing. NASTAD requests that HRSA investigates Turing’s violations of the non-discrimination requirement and imposes appropriate penalties," argued NASTAD's Executive Director, Murray Penner. [1]

A full version of the letter can be read here.

The Human Rights Campaign's CEO,  condemned Mr. Shkreli and Turing Pharmaceuticals. The HRC statement read, "Your greed in raising the single-pill price from less than $15 to more than $750 is unconscionable. It immediately puts at risk scores of medically vulnerable people, including those living with HIV, and women who are pregnant. Medical organizations have estimated that this predatory move could increase the average cost per year for an adult patient reliant on the drug to more than $630,000." [2]

A full version of the letter can be read here.

The news media smelled blood, and they too focused their attention on the issue. "PRICE GOUGING CEO NOW TARGETING AIDS DRUG ASSISTANCE PROGRAMS," read the headline by the popular online news magazine, HIVEqual. Even business-oriented news outlets couldn't resist raising the red flag, evidenced by "Drug companies are reeling after the Martin Shkreli incident — and it could shake up the entire industry," published by Business Insider.

And of course, Twitter lit up like a Christmas tree. The following are just a few of the hundreds of thousands of the Tweets screaming about the 5000% price increase:

Angry about drug price hikes? So are we #MartinShkreli #Daraprim

Price Gouging CEO Now Targeting #AIDS Drug Assistance Programs @HIVEqual

And for raising the price of #Daraprim 5000%, the Anti-Humanitarian Man of the Year Award goes to: Martin Shkreli

Someone will die because of this drug price hike and that's on you. Hope you never sleep another peaceful night. #Daraprim

Ironically, there are only approximately 8,000 Daraprim prescriptions filled annually. [3] But that shouldn't matter, and it most certainly doesn't matter to the patients who rely on those prescriptions.

Turing Pharmaceuticals has already back-tracked from its absurd price hike, but the damage is done and lawmakers from both political parties will surely seek to tame the 800-pound gorilla in the room. The egregious example set by Mr. Shkreli must lead to an open, honest dialogue about the cost of health care in this country -- including drug pricing, insurance companies gouging patients, and even the shortcomings of the publicaly-financed health programs in this country. It should be a conversation that the advocacy community can come together with one, unified voice!

[1] National Alliance of State & Territorial AIDS Directors, "NASTAD ASKS FOR FEDERAL INVESTIGATION IN RESPONSE TO DARAPRIM PRICING AND ACCESS," September 22, 2015.
[2] Human Rights Campaign, "HRC President Chad Griffin Calls on Drug Manufacturer to Roll Back Unconscionable 5000 percent Price Hike On Life-Saving Treatment," September 22, 2015.
[3] The New York Times, "Drug Goes From $13.50 a Tablet to $750, Overnight," September 20, 2015.

Wednesday, September 2, 2015

HCV Workshops

By: Marcus J. Hopkins, Blogger, Community Access National Network
September 2015 will mark the ADAP Advocacy Association’s  8th Annual ADAP Conference -- A National Conversation about the Ryan White CARE Act and the AIDS Drug Assistance Programs -- an event that brings together patients, advocates, activists, program coordinators, and government administrators to discuss issues relevant to the AIDS Drugs Assistance Program (ADAP). The conference is filled with educational and networking opportunities designed to unite all parties in the conversation about what is most important to people living with HIV/AIDS for whom access to ADAP is a vital part of their survival.
Prior to the start of this year’s conference, two free pre-conference workshops are available on September 24th, 2015, focusing specifically on the burgeoning healthcare crisis that is HCV. These two workshops – Nightmare in Appalachia: How Co-Infection is Disproportionately Impacting Rural Communities and Tactical Changes: Why Comprehensive Harm Reduction Policies Work – will feature a group of panelists (myself, included) who will help to lend some level of insight and expertise to what can often be a confusing situation of which to keep track.
I am very honored to be included on this panel, and look forward to bringing my own experiences dealing with access issues in the Appalachian region. With the recent reveal of the White House strategy to further investigate the root causes and potential solutions to the HCV epidemic sweeping across several states, it seems the perfect time to hear the perspective of someone who not only advocates for Appalachians living with HIV and HCV, but who also lives and works in the area
Having lived for most of my life in and around the Appalachian Region, I can personally attest to the unique challenges people living in this geographically unique region of the United States face when attempting to access low-cost, quality healthcare services. There are many issues working in tandem to create seemingly insurmountable barriers to healthcare:
  • Higher incidence and concentration of poverty
  • Fewer local and regional healthcare options
  • Lower healthcare-related education levels (AKA – Healthcare IQ)
  • Generational and traditional distrust of authority/government institutions
  • Physical geography (distance and ease of travel to healthcare locations)
  • Rampant and resurging stigmata related to health conditions
When people speak of Appalachia, many write the area off as a lost cause. Generations of poverty, drug and alcohol abuse, and social immobility have largely prevented many short-term healthcare initiatives from taking hold. Furthermore, most of the Appalachian states have governments leery of accepting or establishing long-term healthcare initiatives and programs designed to work over time, rather than produce immediate results.
It’s often difficult for people to understand how issues of access really do hamper the ability of Appalachians living with HIV and HCV to receive testing, treatment, and rehabilitative services. This is something I hope to bring to these workshops, and I look forward to helping shed some light on the difficult road ahead.
CLICK HERE to register for the pre-con workshops, or to learn more about them.
Disclaimer: Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Wednesday, August 19, 2015

Thank You, Ryan White; ADAP Saves Lives

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

The more things change, the more they stay the same.

In 1984, during the midst of the public hysteria over the emergence of AIDS in the United States, it was a 13-year old boy from Indiana who defined the courage of a nation. That young boy's name was Ryan White.

(To learn more about Ryan's story, click here)

Decades later, we honor that young boy from Indiana by celebrating the passage of the law named after him: Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. As the nation's only public healthcare program specifically designed to provide supports and services for people living with HIV/AIDS, it is hard to truly measure the impact it has had in linking patients to timely, appropriate care and treatment. Simply put; it has saved hundreds of thousands of lives since 1990!

A key component of the Ryan White CARE Act is the AIDS Drug Assistance Program (ADAP), which funds access to medications for the treatment of HIV-infection. Amendments to the law over the years have added additional language allowing ADAP funds to be used to purchase health insurance for eligible clients, as well as to pay for services that enhance access, adherence, and monitoring of drug treatments. Today, ADAP serves as model government program.

ADAP enjoys broad bi-partisan support. The program continues to receive more federal dollars annually (albeit far less than what is needed) despite budget austerity in Congress. It is routinely recognized as a cost-efficient, taxpayer-funded program. As recent as last month, we learned that ADAPs have also assisted in the success of the Affordable Care Act's implementation (Editor's Note: read our last blog, 68,000 Patients Obtained ACA Insurance Coverage, Thanks to ADAP).

The virtue's of the law were spelled out in an Op-Ed penned by Sean Cahill, PhD and Kenneth Mayer, MD. They call for additional federal and state funding, more front-line public health training, better culturally competent and nondiscriminatory care, and increased program coordination. The ADAP Advocacy Association agrees!

Yet, despite the progress of the last few decades there still remains an underlying barrier preventing access to care for far too many. That barrier is stigma. It is the very same stigma that Ryan White confronted while attending Western Middle School in Indiana some 31 years ago.

According to the SERO Project, currently there are over thirty States across the nation with "HIV-specific" statutes criminalizing some aspect of HIV/AIDS. Even in States without an HIV-specific statute, people living with HIV/AIDS are still at risk of prosecution under other criminal statutes.

Map of the United States showing states with HIV-specific criminalization laws. Learn more at
Source: SERO Project
As we celebrate the extraordinary life of a 13-year boy who won over the hearts of a nation (and helped to educate them, too), as well as the law named after him to help the people living with the same disease, let's remember there is much more work to be done!

Thank you, Ryan White!

Thursday, July 30, 2015

68,000 Patients Obtained ACA Insurance Coverage, Thanks to ADAP

By: Brandon M. Macsata, CEO, ADAP Advocacy Association, and Marcus J. Hopkins, Project Director, HIV/HCV Co-Infection Watch, Community Access National Network

ADAPs remain at the forefront of adapting HIV care and treatment services to an evolving public health landscape. Supporting clients in public and private insurance coverage under the ACA is a tremendous opportunity to improve the overall health of clients and maximize Ryan White Program resources. These figures represent a huge success for ACA enrollment and implementation, demonstrating the ability of our ADAP and Ryan White Program system of care to transition vulnerable populations to new insurance coverage and keep them engaged in the health system in order to achieve healthy outcomes and ultimately prevent new infections,” summarized the National Alliance of State & Territorial AIDS Directors' (NASTAD) Executive Director, Murray Penner, upon releasing some important findings on July 24, 2015.[1]

Penner's statement was in response to the AIDS Drug Assistance Programs (ADAPs) assisting 68,000 clients living with HIV/AIDS being served by the program gain access to health insurance coverage under the Affordable Care Act (ACA). That figure included 48,000 patients enrolled in a Qualified Health Plan (QHP), funded by ADAP, and an additional 20,000 patients transitioned to Medicaid.[2]

2014 chart shows 25,000 total transitions, with 12,000 as QHP transitions and 13,000 as Medicaid transitions. 2015 chart shows 68,000 total transitions, with 48,000 as QHP transitions and 20,000 as Medicaid transitions.
Source: NASTAD [3]
To download the NASTAD Fact Sheet, "ADAP SUPPORTS EXPANDED ACCESS TO CARE," click here.

Clearly, ADAPs remain a vital safety net for thousands of people living with HIV/AIDS nationwide, and that fact is unlikely to change into the foreseeable future. Despite robust ADAP programs, and overall increased access to care under the ACA (as demonstrated by this latest news), systemic challenges remain for patients living with HIV/AIDS. Among them, waiting lists and other cost containment measures persist; not to mention new challenges such as marketplace discrimination and roadblocks to the ACA's full implementation.

With the uneven rollout of the ACA's Medicaid expansion, particularly in southern states controlled by Republican governors and/or Republican legislatures, many public health advocates have routinely expressed concern over the number of patients potentially falling through the cracks of the new law. This news has major implication for people living with HIV/AIDS, as well as people living with Viral Hepatitis.

ADAP, under Part B of the Ryan White CARE Act, is designed to be the “payer of last resort,” meaning that it should only be accessed if there are no other options available to HIV-infected clients. Since the Ryan White CARE Act’s inception in 1990, the definition of “last resort” has been continually updated to reflect current Wholesale Acquisition Costs (WACs) and Average Wholesale Prices (AWPs) of medications, primarily by adjusting the income threshold in relation the to the Federal Poverty Limit (FPL). This is expressed as a percentage of the FPL (e.g. 400% of FPL).

This creates an uneven landscape among the 59 ADAPs. While a client’s annual income may allow them to qualify for benefits in one state or territory, they may not be eligible for coverage in another state.

One significant challenge of the Ryan White CARE Act is that funds allocated for the program are prohibited by law from covering the costs of inpatient hospital care.[4] This means that, while prescription drugs and outpatient care (such as check ups and physician visits) are covered, any visits to hospitals, clinics, or physicians fall on the shoulders of the client. The lack of inpatient coverage means that Ryan White clients must have some form of supplemental coverage, as well, such as Medicaid, Medicare, or private insurance.

It has prompted many ADAPs (Colorado, Louisiana, and West Virginia, for example) to use their funds to help clients purchase and pay for primary health insurance coverage. Clients choose from a list of available health insurance providers, and Ryan White funds are used to pay the cost of premiums, deductibles, and/or co-payments for prescriptions and/or visits.

Whether or not these ADAPs will cover HCV drug therapies for clients whose primary insurance does not cover them varies from program to program, and is dependent upon available funds, at the time. Colorado, for example, may step in to provide coverage for HCV drug therapies if the primary insurer does not cover or rejects coverage for HCV drug therapies, but does so only with a Prior Authorization and if funds are available to do so.

It appears likely that more ADAP programs will move toward helping clients purchase and pay for primary insurance coverage over time, as it may serve as a cost-containment measure – it may be less expensive for ADAPs to pay for the cost of insurance and co-pays for clients, rather than paying directly for medications. While more programs may move over to this model that should not suggest that every state is considering doing so, at this time.

[1] National Alliance of State & Territorial AIDS Directors, "AIDS Drugs Assistance Program Supports 68,000 People Living with HIV in Gaining ACA Coverage," July 24, 2015.
[2] National Alliance of State & Territorial AIDS Directors, "AIDS Drugs Assistance Program Supports 68,000 People Living with HIV in Gaining ACA Coverage," July 24, 2015.
[3] National Alliance of State & Territorial AIDS Directors, "ADAP SUPPORTS EXPANDED ACCESS TO CARE," July 24, 2015.
[4] National HIV/AIDS Initiative at the O’Neill Institute for National and Global Health Law, Georgetown University Law Center, "HIV Policy Experts Offer Recommendations for Updating the Ryan White HIV/AIDS Program," June 26, 2015.

Friday, July 24, 2015

It’s All About The Money: How Mandatory Mail Order Pharmacy Puts The Lives of People Living With HIV and Hepatitis C At Risk

By: Michelle J. Sherman, RPh, FASCP, AAHIVP, MichRx Pharmacist Consulting Services, Inc.

Over the past couple of years health insurance companies have added HIV antiretroviral medications to their “Specialty Drug Lists.” This results in the drugs being placed on the highest copay tiers with the highest copay structure. In many cases, it is unaffordable for people living with HIV/AIDS. In addition, health insurers have forced clients to utilize mail order “Specialty Pharmacies” picked by the health insurance plan.

What is Specialty Drug?
In defining specialty drugs there are two main factors: cost and complexity. Using a cost-based approach, CMS [Centers for Medicare & Medicaid Services] categorizes a specialty drug as one with a minimum monthly cost of $600 with respect to the Medicare Part D drug benefit. Other organizations utilize a higher cost threshold for specialty classification that may be as much as double that of CMS. Complexity can encompass a number of factors and affect various groups, including patients, payers, manufacturers, and the pharmacy itself.[1]

About 25% of people infected with HIV/AIDS in United States are co-infected with Hepatitis C (HCV). Intravenous drug users (IDUs) are co-infected with HIV/HCV at rates between 50%-90%. Additionally, medications used to treat HCV are extremely expensive and are also classified as specialty drugs.[2]

Many of these mail order pharmacies are owned and operated by the insurance company themselves. There are so many conflicts of interest in this behavior you would think the FTC [Federal Trade Commission] would put a stop to it, but instead they seem to turn a blind eye and is encouraged. In recent weeks, we have seen major insurance company mergers. Aetna spent $37 billion to buy its rival Humana; Centene spent $6.3 billion to buy Health Net and Anthem is close to a $47 billion deal to buy Cigna.

As Robert Reich so eloquently put it “We’re rapidly on the way to having a handful of giant health insurers. The only difference between this outcome and a government-run single payer, such as Medicare for all, is that revenues will go into executive salaries, dividends, and advertising and marketing rather than into lower premiums and health care.

The insurance companies dupe employers, CMS, ADAP’s [AIDS Drug Assistance Programs], State Medicaid’s and Insurance Exchanges when they are told that they will “get a better deal” and cost them less if they make their employees and members utilize mail order pharmacies instead of local community pharmacies. This is just not true. The interest for the insurance companies and their relationship with their specialty pharmacies is one thing…Making Money! When Cigna forced their members into mandatory mail-order, Cigna profits grew 29% in the 4th quarter of 2014. Cigna’s mail-order pharmacy revenues increased 23% from 2013 to 2014.

Furthermore, mail order pharmacies send out medication to patients without ever contacting the patients and providing care to see if the patient is even taking the medications. According to the National Community Pharmacists Association (NCPA), it results in billions of dollars of wasted medications that drain the healthcare system.

Pill bottles lined up on a counter to demonstrate the number of medications wasted by mail order pharmacies.
Photo Credit:
National Community Pharmacists Association (NCPA)

So how are these mail order mandates putting the lives of people living with HIV at risk?

Community HIV pharmacies have been providing excellent care to people living with HIV/AIDS for over 30 years, managing the patients' drug therapies to avoid potentially fatal drug-drug interactions. Pharmacists help clients with adherence, ensuring that clients take their medication every day so they do not develop resistance to HIV medications, and also provide education on an array of other issues critical for an HIV-positive client's quality of life and well being, such as linkage to other services within their community. Clients have forged relationships with their HIV pharmacists, whom they know, like and trust, and who have become crucial health care providers on the care teams of people living with HIV/AIDS.

Several lawsuits have been filed against these insurance companies for discriminating against people living with HIV/AIDS by forcing them into mail order pharmacies. Consumer Watchdog has been successful in settling lawsuits with Anthem Blue Cross and United Healthcare. At this time there are active lawsuits against Aetna and Cigna. Will CVS Caremark and Express Scripts be next? We can only hope so.

The HIV Continuum of Care shows that of the 86% of people diagnosed with HIV, only 40% are engaged in care; 37% are prescribed antiretroviral therapy and only 30% are virally suppressed.[3]  I believe that mail order pharmacies would never improve the number of people virally suppressed, in fact this practice could make the number of people virally suppressed even worse…and here is why:

  • Choice. People living with HIV/AIDS are denied choice and are forced to abandon their local community HIV pharmacists that they have established relationships. 
  • Discrimination. People living with HIV/AIDS (and HCV) are discriminated against. All the lawsuits that have been filed demonstrate this clearly.
  • Privacy. These plans threaten patient privacy. Confidentiality is paramount for people living with HIV/AIDS. Receiving prescriptions via mail where they live or work often breaches patient confidentiality. 
  • Sensitivity. This is a major issue and many people living with HIV/AIDS feel uncomfortable discussing their situation over the phone with people they do not know or understand them. It is usually very difficult to get in touch with the pharmacies. Clients call and are shuttled from person to person in the phone tree, causing further stress and there is no continuity of ever speaking to the same person. The responsibility is on the patient to contact the pharmacy not the other way around. People working the phones are usually not trained in the HIV Continuum of Care and are usually not sensitive to people living with HIV/AIDS and related issues. With some insurance companies their call centers are outsourced to other countries, where the callers have no idea how to deal with clients and solve their issues. One client was told by the mail-order pharmacy that they could not mail to a PO Box but could deliver it to his work or to a neighbor.
  • Drug Interactions. Disjointed pharmacy services result in life threatening consequences. Mail order pharmacies are only interested in filling the “specialty” prescriptions for clients, and therefore only supply HIV antiretrovirals or HCV medications. They encourage clients to get the rest of their medications from their local pharmacies (the pharmacies they know, like and trust and have established relationships). This tactic is catastrophic and can result in major drug-drug interactions and negative clinical outcomes. The mail-order pharmacy has no idea (nor do they care) what other medications including over the counter medications, vitamins, supplements and even street drugs the client is using. As a pharmacist and healthcare provider this a major cause for concern and proof that the mail-order hype that they provide better care is just plain wrong. 
  • Coordination. There is no coordination of care. The HIV Continuum of Care is not about filling and billing the medications, throwing it in the mail and hoping it arrives on time. People living with HIV/AIDS, as well as HCV, need coordination of care such as referrals to physicians, mental health providers, ASO’s, support groups, legal aid, community resources just to name a few; and their local trusted HIV pharmacist can provide this coordination of care….the mail order pharmacy cannot provide it.
  • Timeliness. Prescriptions arriving late. Mail-order pharmacies are notorious for poor service and having prescriptions arrive late. Adherence is paramount with antiretroviral medications. We know that adherence must be 95% or better. When clients don’t receive their medications on time, the pharmacy is promoting non-adherence, which is completely unacceptable. In my experience, it happens more often than not, clients become even further stressed out and they reach out to their local HIV pharmacist….yes the one they have a relationship with, who they know, like and trust. The local pharmacy then has to try to solve the problem caused by the mail-order pharmacy.
  • Billing. Mail order pharmacies do not bill ADAP. Many clients that are forced to use mail-order pharmacies also qualify for ADAP. In these cases ADAP will pay the copay for the antiretrovirals resulting in a zero copayment for the client. This is a critical part of HIV care, as copays can often be high and unaffordable to the client. Mail-order pharmacies don’t bill ADAP therefore clients are caught between a rock and a hard place. They are forced to use these pharmacies, which actually cost them more money, where using their local trusted HIV pharmacy would cost them nothing.
  • Patient Assistance. Mail order pharmacies do not utilize manufacturer copay cards. For clients who don’t qualify for ADAP, manufacturer copay cards, which save clients huge out of pocket expenses every month. In many cases the copays are unaffordable. If clients could use their local HIV pharmacies, copay cards can be utilized costing the client very little and in most cases nothing.
  • Stress. Stress related negative outcomes are common.[4] The resulting stress caused by the mail order pharmacy mandates on people living with HIV/AIDS is detrimental to the immune system and can further compromise the immune system.[5]   

From everything you have read in this article, you can clearly see that forcing people living with HIV/AIDS and/or HCV to use mail-order pharmacies can greatly compromise care and to the behemoth insurance companies it’s about one thing…..IT’S ALL ABOUT THE MONEY…..Do the lives really matter?

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

[1] American Pharmacists Association: 
[2] CDC:
[3] HIV Continuum of Care:
[4] Psychological Stress and the Human Immune System: A Meta-Analytic Study of 30 Years of Inquiry. Suzanne C. Segerstrom and Gregory E. Miller.
[5] Chronic stress, glucocorticoid receptor resistance, inflammation, and disease risk. PNAS, April 2, 2012 DOI: 10.1073/pnas.1118355109

Friday, July 17, 2015

ACA Marketplace Insurance Plans: The Good, the Bad & the Ugly

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

The Patient Protection and Affordable Care Act (PPACA), or the Affordable Care Act (ACA) – also known as Obamacare – has provided a tremendous opportunity for people living with HIV/AIDS to better access linkages to care and treatment. The total number of uninsured Americans has dropped approximately 6 percent since the law's enactment[1], although it is unknown how many people living with HIV/AIDS are included in that number because specific data is hard to come by (surprise, surprise).

Anyone interested in diving into some of the available data might want to read the analysis prepared by John S Kiernan, whereby he compared the rates of the uninsured by State before and after Obamacare.[2] The data used to compile this report is courtesy of the Kaiser Family Foundation, the Centers for Medicare and Medicaid Services, the Department of Health and Human Services, and the U.S. Census Bureau.

Figure 1. Main Findings: Uninsured Rankings

Source: WalletHub

Unfortunately, not everything with Obamacare's implementation has gone according to plan because various unintended consequences have routinely emerged since 2013. Among them -- and probably one of the most disturbing -- is the practice by insurance carriers engaging in discriminatory practices against people living with HIV/AIDS, as well as other so-called "expensive" chronic conditions.

Photo of the word "discrimination" in type text, with the definition of the word in the background.
Source: Human Resource Solutions

One of the earliest such practices emerged in Louisiana (and North Dakota) by Blue Cross and Blue Shield of Louisiana, which we covered in our "Tarnished Blue" blog early last year. At issue: Blue Cross and Blue Shield of Louisiana rejected third party premium subsidies from the Ryan White program on behalf of its policyholders. Left unchecked, many people living with HIV/AIDS who earn too much to qualify for Medicaid but not enough to qualify for federal subsidies for insurance plans potentially could have fallen into a coverage gap.

However, advocates were quick to respond. Lambda Legal led the charge against Blue Cross and Blue Shield of Louisiana, charging: "The situation is urgent. Refusing federal funds that provide life-saving care to people living with HIV could potentially affect thousands of low-income Louisiana residents, and if BCBS does not recognize the error of its ways and reverse course, the only logical explanation for its conduct is discrimination. This strategy keeps people living with HIV off BCBS's insurance rolls, and smacks of the sordid legacy of years of insurance industry practices designed to deny coverage to those living with HIV."[3]

After clear guidance by the federal government, and favorable legal proceedings, Blue Cross and Blue Shield of Louisiana backed down and once again started accepting third-party premium subsidies. Patients, 1; insurers, 0.

However, it didn't take long for yet another coverage crisis to emerge. "Adverse selection" has increasingly been a thorn in the side of patients. Adverse selection is the practice whereby "insurers try to encourage healthier people to buy coverage by making it difficult or even impossible for individuals with pre-existing conditions to obtain coverage."[4] In all fairness, adverse selection existed well before Obamacare, and it will probably continue to exist (in manner or another) for a long time to come.

Earlier this year,  The AIDS Institute (TAI) and the National Health Law Program (NHeLP) filed a complaint with the federal government against several health plans in Florida, accusing them of engaging in discriminatory practices against people living with HIV-infection engaging in adverse selection. That complaint has already yielded positive results for patients, evidenced by Aetna (one of the companies named in the complaint) agreeing to reduce patient costs for HIV medications nationwide in the qualified health plan marketplace. Patients, 2; insurers, 0.

That battle continues today, unfortunately. TAI announced last month that Florida would be requiring insurance plans to limit patient cost-sharing for HIV therapies starting in 2016. In other words, according to TAI, excessive co-insurance would be deemed discriminatory (TAI, 06/12/15).

Summarized Carl Schmid, Deputy Executive Director for The AIDS Institute, about the announcement by the Florida Office of Insurance Regulation: “This is a major victory for people living with HIV who rely on medications to remain healthy. We thank the Florida Office of Insurance Regulation for recognizing that insurers charging excessive co-insurance is discrimination and harms people with HIV who cannot afford the cost of their medications.”

Patients, 3; insurers, 0.

[1] CNBC, "Health uninsured rate falls, yet again, under Obamacare," July 10, 2015. Accessed on 07/14/15 at
[2] WalletHub, John S Kiernan, "Rates of Uninsured by State Before & After Obamacare," 2014. Accessed on 07/14/15 at
[3] Lambda Legal, "Lambda Legal Files Administrative Complaint Challenging Louisiana BlueCross BlueShield Policy Targeting People with HIV," February 10, 2014. Accessed on 07/14/15 at
[4] About Health, "What is Adverse Selection," June 19, 2014.

Thursday, July 9, 2015

HIV Policy Experts Offer Recommendations for Updating the Ryan White HIV/AIDS Program

By: Jeffrey S. Crowley, program director of the National HIV/AIDS Initiative at the O’Neill Institute for National and Global Health Law at Georgetown University Law Center

The O’Neill Institute for National & Global Health Law, along with other leading HIV/AIDS experts, have issued recommendations for ensuring that the Ryan White HIV/AIDS Program is updated to be maximally effective in a changing health care environment. The series of three policy briefs ( are designed to help the Obama Administration and Congressional leaders conceptualize structural changes to the program, and also to help HIV community stakeholders identify opportunities for improving engagement in care by adapting the critical program.

The Ryan White HIV/AIDS Program, enacted by Congress in 1990 and most recently reauthorized on a bipartisan basis in 2009, is a federally funded program that provides lifesaving HIV treatment and critical health services to uninsured and underinsured people living with HIV in the United States. Administered by the Health Resources and Services Administration in the U.S. Department of Health and Human Services, the program supports an estimated 536,000 people with HIV each year. The program was funded at $2.32 billion in fiscal year 2014.

President Obama signing the Ryan White CARE Act Reauthorization Act.
Source: White House Photo

The Ryan White program is the glue that holds together the disparate parts of the HIV care response in the United States. A common question is whether this care and treatment program is still needed now that access to insurance has been expanded, and the resounding response is: yes.

This is a time of perhaps unprecedented opportunity to increase engagement in care in a way that better supports all people with HIV in the U.S. to access treatment and achieve effective suppression of the HIV virus. By doing so, it keeps people healthy and also reduces HIV transmission. Congress is expected to consider the program’s reauthorization and future direction in the coming years.

Research shows that insurance coverage matters, but, in 2010, more than 70 percent of Ryan White Program clients had Medicaid, Medicare or private insurance. They needed support from the Ryan White program because of financial gaps and inadequate coverage for case management, transportation and other critical services to help keep people with HIV engaged in care.

The reports, the first of three for the ongoing Ryan White Policy Project at the O’Neill Institute, addressed three critical topics:

  • Aligning the Ryan White HIV/AIDS Program with Insurance Coverage

 Originally built as a standalone system, the Ryan White program has evolved to a complement to the insurance system. Nonetheless, as the health system seeks to better integrate services and design more effective and efficient care delivery models, this report offers strategies for better aligning the Ryan White program with insurance to ensure that people with HIV do not get left behind.

  • Refining Ryan White HIV/AIDS Program Administrative Activities to Increase Population-Level Impact

The Ryan White program has always looked and acted differently than other parts of the health system.  This report provides recommendations for ways to streamline existing planning and monitoring activities to retain critical aspects of community engagement. It also forcefully calls for increased Ryan White program investments to build health department data management systems and capacity to better partner with Medicaid, Medicare, health plans, and HIV prevention programs to monitor engagement in care and intervene when care is interrupted.

  • Bolstering the HIV Clinical and Non-Clinical Workforce

Generations of dedicated HIV care providers and community partners have built today’s HIV care system. While more must be done to better reach underserved populations and communities, the need is great to bolster and sustain the existing HIV care workforce. This report offers recommendations for building upon recent changes to the AIDS Education and Training Center (AETC) program and other efforts to support clinical and non-clinical providers.

Editor's Note: These reports were informed by consultations with people living with HIV, HIV medical and non-medical providers, Ryan White grantees, and federal HIV policy and program staff. The Ryan White Policy Project is supported by funding from Gilead Sciences, Inc. The report was prepared by Jeff Crowley and Connie Garner. Crowley reports no recent personal financial interests related to the report. Garner is policy director for Foley Hoag representing Gilead Sciences.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Friday, June 26, 2015

340b: A Peculiar little Designation that is Worth $$$

By: David W. Poole, Director of Legislative Affairs, Southern Bureau, AIDS Healthcare Foundation

“340b” is a simple 3 digit number with one letter of the alphabet attached that represents so much more than what this peculiar little designation might imply. Since 1998, Section 340b of the Veterans Care Act of 1992 (Public Law 102-585) has ensured that millions of dollars in life-saving treatments purchased by eligible federally funded entities under the Ryan White CARE Act of 1990, as amended, are priced at a much reduced level that is calculated and prescribed clearly in law and policy.

For the purposes of this editorial we are focusing only on the HIV/AIDS universe inclusive of the benefits to the patients and their providers, although the overall 340b program extends well beyond the Ryan White eligible world to other healthcare providers that serve many different patient populations beyond HIV/AIDS.

The 340b program is under serious scrutiny for change by many stakeholders, most notably the pharmaceutical and biologics industry who resist and reject anything such as federal law that erodes their profit margins. Make no mistake about it, their interest in seeing the 340b program “brought under control” is all about profits. “Abuses” can be cited as the reasons for wanting change; however, abuses can be addressed in many effective ways that do not require legislation.

Pill capsule with the words "340b" on it
Source: Rx Showcase
The 340b program provides much more than better pricing to the eligible Ryan White entities; it provides an opportunity for these non-profit agencies to generate revenue that is reinvested back into the HIV/AIDS community in the form of expanded care and treatment capacity. This benefit extends to state Departments of Health (via the AIDS Drug Assistance Programs), hundreds of AIDS Service Organizations and clinics, and their patients nationwide that are already dealing with a ridiculously complex healthcare payer landscape where the Affordable Care Act (ACA) and Ryan White intersect, especially in states where Medicaid expansion has not and is NOT likely to occur anytime in the near future.

In addition, assurances of long term and sustained care and treatment funding from the Health Resources and Services Administration (HRSA) appears to be over or at the very least in serious jeopardy. HIV/AIDS is no longer the public health priority it once was and we must speak out loudly when a threat to stable funding resources such as 340b becomes imminent – and it should be noted that this funding is on the backs of healthy and robust for-profit industry giants.

Again, our voices must be heard and we must not succumb to the influence of an industry that wants to see their profit margins protected. We are the first to acknowledge the excellent simple antiretroviral treatment regimens and options that have been introduced by the pharmaceutical industry starting in the summer of 2006; however, we must also cite this industry for some of the highest profit margins realized by any business sector. So let’s make it known through very effective advocacy that the 340b section of the Veterans Care Act as it pertains to Ryan White eligible entities should be OFF-LIMITS!

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Friday, June 19, 2015

PAN Foundation Issues Call for Case Studies

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

The Patient Access Network (PAN) Foundation, and in collaboration with The American Journal of Managed Care, has issued a Call for Case Studies. Organizations are encouraged to submit an abstract, which is due by September 15, 2015.

PAN Logo
PAN offers help and hope to people with chronic or life-threatening illnesses for whom cost limits access to critical medical treatments. Since May 2004, PAN has provided more than 467,000 underinsured patients with over $880 million dollars in much needed financial assistance to cover out-of-pocket medical expenses. Many of these patients would have few alternatives without the help of PAN. That’s why charitable donations from both the public and private sector are so crucial to continuing the financial assistance provided by the Foundation.

Summarized Amy Niles, Director of Alliance Development: "Every day, it seems that there is another research study or article highlighting the increasing cost-sharing burden for patients seeking access to critical therapies.  This topic was also a focus of PAN’s Patient Advocacy Roundtable hosted in the fall of 2014."

PAN is interested in learning more about the impact cost-sharing has had on patients being served and its impact on organizations. Importantly, PAN would like to learn about the strategies being implemented, or plan to implement, to address this impact. Click here to download the material that describes PAN’s Call for Case Studies in more detail.

As always, feel free to contact PAN with any questions about this initiative. Amy Niles can be reached by phone at (202) 661-8073 or email at

Friday, May 29, 2015

2015 National ADAP Monitoring Project Annual Report

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

Earlier this month the National Alliance of State & Territorial AIDS Directors (NASTAD) released its 2015 National ADAP Monitoring Project Annual Report. The report represents the most comprehensive annual analysis of the AIDS Drug Assistance Program (ADAP), including relevant data on the individuals seeking ADAP services, as well as the services being provided to them.

Photo of the Annual Report's cover
National ADAP Monitoring
Project: 2015 Annual Report
The report provides an overview of the status of ADAPs following the Affordable Care Act (ACA) implementation. It provides 1) background and context, 2) key findings, and 3) detailed charts and tables.

If there is one reoccurring theme that has emerged over the years at the ADAP Advocacy Association's Annual Conference -- and its various summits held across the county -- is the need for more timely data. For example, "There is a lack of baseline data available," was identified as a key assumption in our Final Report from the HIV/HCV Co-Infection Summit held in April 2013.

Even as some organization's are prematurely pushing for the reauthorization of the Ryan White CARE Act, others groups -- including the ADAP Advocacy Association -- want more data on the ACA's impact on the program and the clients it serves before opening up the law.

The bottom line: data is key! To that end, NASTAD should be commended for its work on providing ADAP-related data to the HIV/AIDS advocacy community.

According to NASTAD[1], among the key findings:

  • ADAP enrollment reached its highest level in the program’s history, with over 258,000 clients enrolled in FY2013 (April 1, 2013 – March 31, 2014).
  • ADAPs reported spending over $110.7 million on insurance purchasing/continuation in June 2014; 61,456 (42%) ADAP clients were covered by such arrangements. By comparison, ADAPs used $27.6 million in June 2013 for insurance purchasing/continuation.
  • The majority (63%) of all clients served by ADAPs in June 2014 were reported as virally suppressed, defined as having a viral load that is less than or equal to 200 copies/mL.  By comparison, thirty-percent (30%) of all people living with HIV (PLWH) in the U.S. are reported as virally suppressed.

Of particular interest to the ADAP Advocacy Association, ADAPs continue to play a pivotal role in ensuring low-income patients living with HIV/AIDS with little or no health insurance have access to the timely, appropriate care that they deserve. Whereas ADAP enrollment decreased 3% from June 2013 to June 2014 (210,411 patients enrolled and 204,988 patients enrolled, respectively), it nonetheless provided life-saving medications to hundreds of thousands of individuals.[2]

Not surprisingly, ADAP continue to thrive in the South...especially since most of the states in this region of the country have not expanded their Medicaid programs under the ACA. Among southern states, only Georgia witnessed a decreased in its ADAP enrollment (-0.03%). All of the other states saw increases in their ADAP enrollment, including an 8% increase in Alabama, 4% increase in Arkansas, 7% increase in Florida, 27% increase in Louisiana, 3% increase in North Carolina, 5% increase in South Carolina, 10% increase in Tennessee, 6% increase in Texas, and 4% increase in Virginia. Mississippi didn't not provide data on its enrollment.[3]

Map of the U.S. showing the States that have expanded Medicaid, still debating expansion, and not moving forward at this time.

One thing is clear from NASTAD's 2015 National ADAP Monitoring Project Annual Report: ADAPs continue to provide an important safety net of last resort. This year's report, along with other ongoing data collection reports, provide the patient advocacy community with plenty of ammunition to educate policy-makers on the important of the AIDS Drug Assistance Programs, as well as other programs assisting under-served communities.

CLICK HERE to download the National ADAP Monitoring Project: 2015 Annual Report.


[2] National Alliance of State & Territorial AIDS Directors, "2015 National ADAP Monitoring Project Annual Report, Table 6: Total Clients Enrolled and Served, June 2013 and June 2014," p. 46, May 12, 2015.
[3] National Alliance of State & Territorial AIDS Directors, "2015 National ADAP Monitoring Project Annual Report, Table 6: Total Clients Enrolled and Served, June 2013 and June 2014," p. 46, May 12, 2015.

Friday, May 15, 2015

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

By: Marissa Tonelli, Senior Manager, HealthHCV Initiative

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

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

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

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

To participate in the survey, go to:

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

If you are interested in distributing the survey through your networks, please contact Marissa Tonelli, Senior Manager of HealthHCV, at or 202-507-4726. For more information about HealthHCV, visit
[1] Content source: Division of Viral Hepatitis and National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
[2] European Association for the Study of Liver Disease (EASL), EASL Recommendations on Treatment of Hep C, April 2014

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Friday, April 17, 2015

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

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

The Patient Protection and Affordable Care Act (PPACA), or the Affordable Care Act (ACA) – also known as Obamacare – continues to unfold and its overall impact is still yet unknown. Most of the law’s major provisions were phased in by January 2014, with other provisions phased in by 2020. The ACA has numerous implications generally on the United State’s health care delivery system, but more specifically on the supports and services afforded to people living with HIV-infection, or viral Hepatitis, under the Ryan White CARE Act. What’s more, ongoing Medicaid expansion (or lack thereof) and the implementation of insurance exchanges will also impact nearly all healthcare providers, as well as their patients.[1]

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

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

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

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

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

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

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

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

To complete the survey, CLICK HERE.


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