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.

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. 

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.

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!

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.

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.

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.  

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.

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 http://www.adapadvocacyassociation.org/events.html.

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:

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.

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.

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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. 

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.

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!