Thursday, February 11, 2016

2016 National ADAP Monitoring Project Annual Report

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

On February 1st, an analysis of the AIDS Drug Assistance Programs (ADAPs) was released by the National Alliance of State & Territorial AIDS Directors (NASTAD). The 2016 National ADAP Monitoring Project Annual Report tracked state-by-state programmatic changes, emerging trends, and latest available data on the number of clients served, expenditures on prescription drugs, among other things. It is widely recognized by stakeholders has the most comprehensive analysis of ADAP-related information and data, and NASTAD's work provides an essential advocacy tool.

This year's report focuses on two main areas, including:
  • A Model for Optimizing HIV Outcomes Within an Evolving Health System
  • 3 Ways ADAP is Improving Health Outcomes 
Overall the 2016 National ADAP Monitoring Project Annual Report yielded some very compelling data on the success of the AIDS Drug Assistance Programs nationwide in 2015. Some key points are:
  • Over 139,000 clients were served, representing a 5% decrease overall from the previous year;[1]
  • The total ADAP drug expenditures were $130,921,720;[2]
  • Drug rebates accounted for $1.016 billion, or 45% of the overall ADAP budget, representing an increase of 6% from the previous year;[3]
  • ADAP remains the primary payer for those individuals whose insurance cost-sharing responsibilities (e.g., premium, deductible and co-payment/co-insurance) are a barrier to purchasing and maintaining insurance;[4]
  • A majority (72%) of all clients served by ADAPs were reported as virally suppressed, which represents a 12% increase over the previous year;[5] and 
  • A majority of ADAPs pay premiums (84%), deductibles (83%) and prescription co-payments/co-insurance (90%) on behalf of eligible clients.[6]
Accompany this year's report is an InfoGraphic, which NASTAD used to convey the important message behind how ADAPs are improving health outcomes. To download the Infographic, CLICK HERE.


The ADAP Advocacy Association commends NASTAD for its ongoing efforts to keep stakeholders informed, and engaged on the issues enumerated in this year's National ADAP Monitoring Project. To download a copy of the report, CLICK HERE.


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[1] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 3.
[2] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 3.
[3] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 4.
[4] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 5.
[5] National Alliance of State & Territorial AIDS Directors, "2016 National ADAP Monitoring Project Annual Report," February 1, 2016, p. 3.

Thursday, February 4, 2016

New 340B Services Caucus Focuses on Patients

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

On January 28, 2016, something peculiar happened in the debate over the future of the 340B Drug Pricing Program. The ADAP Advocacy Association launched its new 340B Service Caucus, thus giving patients living with HIV/AIDS a seat at the table.

The Health Resources and Services Administration (HRSA) summarizes the program as follows:

"The 340B Drug Pricing Program requires drug manufacturers to provide outpatient drugs to eligible health care organizations/covered entities at significantly reduced prices. The 340B Program enables covered entities to stretch scarce Federal resources as far as possible, reaching more eligible patients and providing more comprehensive services. Eligible health care organizations/covered entities are defined in statute and include HRSA-supported health centers and look-alikes, Ryan White clinics and State AIDS Drug Assistance programs, Medicare/Medicaid Disproportionate Share Hospitals, children’s hospitals, and other safety net providers."[1]


Rx bottle with the label, "340B"
Photo by 18percentgrey on Getty Images

The 340B Drug Pricing Program has increasingly been discussed and scrutinized by lawmakers, regulators, payers, and trade associations. Throughout the debate, however, one important stakeholder group has been left out of the conversation: the patients! That is about to change.

In August 2015, HRSA issued proposed guidance on the program, and it included language important to "creating a defined link between a medically underserved, vulnerable patient and a 340B covered entity."[2] Leading up to the proposed guidance, HRSA had received feedback from many stakeholder groups.

The National Alliance of State & Territorial AIDS Directors (NASTAD) has been representing the concerns of the State AIDS Drug Assistance Programs (ADAPs); as they should be doing! The Pharmaceutical Research and Manufacturers of America (PhRMA) has been picking up the mantle of the biopharmaceutical research companies; as they should be doing! And the American Hospital Association (AHA) has been speaking up for safety-net hospitals; as they should be doing!

The ADAP Advocacy Association applauds the aforementioned advocacy efforts, but contends that the ongoing debate is further enhanced by adding yet another perspective. The caucus is designed to provide a neutral platform for stakeholders to discuss the program and related public policy initiatives, as well as the Continuum of Care for patients living with HIV/AIDS whom directly and indirectly received their care from Ryan White covered entities, ADAPs, and affiliated clinical providers.

To learn more about the 340B Drug Pricing Program, go to www.hrsa.gov/opa/.


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[1] Health Resources and Services Administration, U.S. Department of Health & Human Resources, "340B Drug Pricing Program," 2016. Last accessed online at; http://www.hrsa.gov/opa/index.html
[2] AIRx Mail, "HRSA's Long-Awaited 340B Guidance: A Good First Step, But More to Be Done," September 2015. Last accessed online at; http://archive.constantcontact.com/fs105/1118550068046/archive/1122395122062.html.

Friday, January 29, 2016

Healthcare is Hostage to Rx Pricing

By: Michael Weinstein, President, AIDS Healthcare Foundation

The impossible has happened. Harvoni, a pill that cures Hepatitis C made by Gilead, is selling for $1044 per pill. Decades ago we were outraged at the high price of AZT which was the first anti-retroviral HIV medication to come to market. Now the price of drugs threatens the long term viability of the entire U.S. healthcare system.

Gilead did not discover Harvoni. It bought the primary compound from a company named Pharmasset for $11 billion. That money came almost entirely from huge profits made by Gilead from the sale of grossly over-priced HIV medications. Pharmasset had planned to charge $36,000 for their drug. But, Gilead was not satisfied with that price and decided to push the envelope all the way up to $94,000 for a three month cure for Hepatitis C. During the same year, John Martin the CEO of Gilead, had total compensation of $206 million.

Photo of Michael Weinstein, President of the AIDS Healthcare Foundation, leading a protest
Michael Weinstein, AHF President, leading a protest.
Anger over drug prices has made this the number one healthcare issue by far among the American people. Presidential candidates Hillary Clinton, Bernie Sanders, and Marco Rubio are condemning Pharma on the campaign trail. Senators Charles Grassley and Ron Wyden are denouncing Gilead and other companies and conducting investigations. Yet, not a single piece of significant legislation is likely to be passed at the national or local level. A simple bill that would have required a little more transparency by drug companies was squashed twice in the last year in the dark blue state of California. Pharma's contributions to candidates on both sides of the aisle combined with vast lobbying budgets make passing legislation impossible.

Citizen ballot initiatives are one of the few avenues available to start to change the system. In fact, ballot initiatives were created to allow citizens to directly enact legislation when their elected officials refuse to act. Which brings us to the California and Ohio Drug Drug Relief Acts that will appear on their respective ballots in November. Pharma is so threatened by these initiatives that they have already contributed $40 million to defeat it in California and are trying every legal trick in the book to keep it off the Ohio ballot.

Pharma is working very hard to try to confuse the issue and pick apart the initiative because polling shows that 78% of California voters would support the initiative. First, to be clear this initiative is only a start to reining in drug prices. It is a very simple concept. The state will pay no more than the Veterans Administration for any drug. Critics, many of whom are directly funded by Pharma, say that the initiative can't be implemented and want us to address every hypothetical implementation issue. That is not our job. That will be the state's job after the initiative passes.

You don't have to believe us about how important these initiatives are in giving voice to the anger over drug prices. Here is what PharmExec.com had to say on December 8, 2015:

"If the voters of California approve this proposition it would establish an incredibly deep, mandatory discount - in essence a "price control" - for the public purchase of prescription drugs in American's largest state. Such an action would not doubt cause an immediate demand for the same VA discount rate to be made available to other states, the federal government, and likely private entities as well. In short, adoption of VA pricing by the State of California would be a pricing disaster for the entire U.S. drug industry."

The California and Ohio Drug Price Relief initiatives can be a catalyst for a movement to stop the rampant greed of drug companies with your support. Please don't be distracted by all the dust the industry will try to throw up to try to divert attention from the real issue - an out-of-control system that is victimizing our country.

Editor's Note: This blog was submitted in response to our previous blog, "Is Ohio the Frontline in the War on Rising Drug Prices?"

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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, January 20, 2016

Is Ohio the Frontline in the War on Rising Drug Prices?

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

Ohio, which is the 7th most populous state in the United States, is quickly shaping up to be the battleground over the rising cost of prescription drugs. The Ohio Drug Price Relief Act is a voter initiated statute spearheaded by the Ohioans for Fair Drug Prices and the AIDS Healthcare Foundation (AHF). The ballot initiative attempts to bring state prescription drug costs -- such as medications covered under the AIDS Drug Assistance Program (ADAP) -- in the Buckeye State in line with the lowest price made available to the U.S. Department of Veterans Affairs.

The Great Seal of the State of Ohio
If the Ohio Secretary of State's Office certifies the signatures -- in which 91,677 valid signatures of registered voters are needed -- then the next step in the process would be the Ohio General Assembly taking up the legislative measure. If state lawmakers failed to approve the legislation within four months, then the petitioners could attempt to place the initiative on a statewide ballot for referendum.

According to Ballotpedia:

The Act would enact Section 194.01 of the Ohio Revised Code to require that notwithstanding any other provision of law and in so far as permissible under federal law, the State of Ohio shall not enter into any agreement for the purchase of prescription drugs or agree to pay, directly or indirectly, for prescription drugs, including where the state is the ultimate payer, unless the net cost is the same or less than the lowest price paid for the same drug by the U.S. Department of Veterans Affairs."[1]

Among other provisions, the Act also:

  • Sets forth the title of the Act as "The Ohio Drug Price Relief Act."
  • Sets forth Findings and Declarations and Purposes and Intent of the Act.
  • Sets forth factors in determining "net cost."
  • Authorizes state departments, agencies and other state entities to adopt administrative rules to implement the provisions of the Act.
  • Provide that the Act shall liberally construed to effectuate its purpose.
  • Provide that if any provision of the Act is held to be invalid, the remaining provisions shall remain in effect.
  • Provide that if the Act is challenged in court, it shall be defended by the Attorney General.
  • Declare that the committee of individuals responsible for circulation of the petition ("the proponents") have a direct and personal stake in defending the Act and any one or more of them may do so in court if challenged. Provide that the proponents shall be indemnified by the state for their reasonable attorney's fees and expenses in defending against a legal challenge to the Act. Provide that the proponents shall be jointly and severally liable to pay a civil fine of $10,000 to the state if the Act or any of its provisions are held by a court to be unenforceable, but shall have no other personal liability.
  • Provide that in the event that the Act and another law are adopted by the voters at the same election and contain conflicting provisions and the Act received less votes, the non-conflicting provisions of the Act shall take effect.
  • Require the General Assembly to enact any additional laws and the Governor to take any additional actions required to promptly implement the Act.[2]
The fight over the ballot initiative has pitted familiar foes against one another, with AHF leading the charge in favor of it, and the Pharmaceutical Research and Manufacturers of America (PhRMA) -- which is the pharmaceutical industry trade association -- trying to squash the measure. The main criticism of the measure is the lack of specifics, including over how it would be enforced.

Upon announcing that the signatures had been submitted to the Ohio Secretary of State, said AHF's president Michael Weinstein, “While we’ve seen ample evidence that there is seemingly no limit to the corporate greed of pharmaceutical companies, we also know that Americans are tired of feeling afraid every time they go to the doctor or it’s time to get a prescription filled. Astronomical prescription drug prices hurt everyone—except the drug makers’ bottom lines. This has got to stop.”[3]

There remains considerable uncertainty over the outcome of the petition effort, as well as what lies ahead with this ongoing debate in Ohio.

“As I had testified to the Ohio Ballot Board, this well-intentioned but sloppily written ballot measure will have no real effect on drug prices due to trade secrets and lack of a verifiable reference source," argued long-time Ohio resident Eddie Hamilton, Director of the ADAP Educational Initiative. "What it will guarantee is lawsuits whose legal fees will be borne by Ohio taxpayers."
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[1] Ohio Secretary of State,"2015-07-21 petition," July 21, 2015; Last viewed online at http://www.sos.state.oh.us/sos/upload/ballotboard/2015/2015-07-21-petition.pdf
[2] Ohio Secretary of State,"2015-07-21 petition," July 21, 2015; Last viewed online at http://www.sos.state.oh.us/sos/upload/ballotboard/2015/2015-07-21-petition.pdf
[3] BusinessWire, "AHF: Advocates Submit 171,205 Signatures for 2016 Drug Pricing Ballot Measure in Ohio," December 22, 2015. Last viewed online at http://www.businesswire.com/news/home/20151222006046/en.

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!


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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, http://www.endbadhivlaws.org, 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 https://www.youtube.com/watch?v=48Sf39k0_xo.

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 lynchv@bc.edu. 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:

www.bc.edu/swhivconf

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.