New Study Demonstrates Value of Tesamorelin for Non-Alcoholic Fatty Liver Disease

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

The ADAP Advocacy Association since its inception has advocated for more open drug formularies under the AIDS Drug Assistance Program ("ADAP") because they promote greater access to care and treatment for people living with HIV/AIDS. By omitting therapies that are approved by the U.S. Food & Drug Administration ("FDA") for the treatment of HIV-infection and related co-morbidities, some State ADAPs are being counter-productive to the needs of the people they're intended to serve. One example is the unfair limitation often put on the drug tesamorelin for the treatment of lipodystrophy. A new study published online in The Lancet shows promise for non-alcoholic fatty liver disease, and as such it might finally change some opinions about adding it to drug formularies.

Photo Source: Drugs.com

Current restrictions on the use of tesamorelin do a disservice to the needs of people living with HIV/AIDS, and diagnosed with HIV-related abnormal accumulation of visceral adipose tissue (VAT) by concluding that the potential discontinued use of tesamorelin and its “expense” is limited its use. Yet, research has shown that between 20% and 30% of HIV-positive patients are experiencing excess VAT. For years, there's been a common misconception that this belly fat is just a physical cosmetic issue that is a side effect of earlier HIV treatments - something that must be accepted as a reality of now living longer with HIV-infection. Recent research dispels that myth so that even with newer anti-retro viral regimens this condition continues to exist.

Some states, such as Massachusetts, have long recognized the value of tesamorelin - not only within its ADAP drug formulary, but by also mandating treatment for HIV-related lipodystrophy for private insurance. The Massachusetts model was largely based on the FDA's findings: “The FDA recognizes the need for therapies to treat patients with HIV-lipodystrophy. The presence of excess fat with this condition may contribute to other health problems as well as affect a patient’s quality of life, so treatments that demonstrate they are safe and effective at treating these symptoms are important.”[1]

The new study - "Effects of tesamorelin on non-alcoholic fatty liver disease in HIV: a randomised, double-blind, multicentre trial" - yielded positive results, such as demonstrating tesamorelin can reduce liver fat and prevent scarring of the liver.[2]

According to the study, "Non-alcoholic fatty liver disease (NAFLD) is a substantial cause of comorbidity in people with HIV and there are no proven pharmacological treatments for the disease in this population. We assessed the effects of tesamorelin on liver fat and histology in people with HIV and NAFLD."[3]

The study's findings concluded:

"61 patients were enrolled between Aug 20, 2015, and Jan 16, 2019, of whom 30 received tesamorelin and 30 received placebo. Patients receiving tesamorelin had a greater reduction of HFF than did patients receiving placebo, with an absolute effect size of −4·1% (95% CI −7·6 to −0·7, p=0·018), corresponding to a −37% (95% CI −67 to −7, p=0·016) relative reduction from baseline. After 12 months, 35% of individuals receiving tesamorelin and 4% receiving placebo had a HFF of less than 5% (p=0·0069). Changes in fasting glucose and glycated haemoglobin were not different between groups at 12 months. Individuals in the tesamorelin group experienced more localized injection site complaints than those in the placebo group, though none were judged to be serious."[4]

These findings bode well for people living with HIV/AIDS, especially as it relates to co-morbidities such as cardiovascular and type 2 diabetes risks. Now it is time for more State ADAPs to take notice.



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[1] U.S. Food & Drug Administration (2010, November 10). FDA approves Egrifta to treat Lipodystrophy in HIV patients. U.S. Department of Health & Human Services. Retrieved online at https://aidsinfo.nih.gov/news/889/fda-approves-egrifta-to-treat-lipodystrophy-in-hiv-patients---november-10--2010.
[2] Brokaw, Sommer (2019, October 15). NIH: Drug reverses liver fat, slows fibrosis in HIV-positive people. UPI. Retrieved online at https://www.upi.com/Health_News/2019/10/15/NIH-Drug-reverses-liver-fat-slows-fibrosis-in-HIV-positive-people/8621571156412/?sl=3.
[3] Stanley, MD, Takara L*, Lindsay T Fourman, MD*,. Meghan N Feldpausch, ANP, Julia Purdy, CRNP, Isabel Zheng, BS, Chelsea S Pan, BA, et al. (2019, October 11). Effects of tesamorelin on non-alcoholic fatty liver disease in HIV: a randomised, double-blind, multicentre trial. The Lancet. Retrieved online at https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(19)30338-8/fulltext.
[4] Stanley, MD, Takara L*, Lindsay T Fourman, MD*,. Meghan N Feldpausch, ANP, Julia Purdy, CRNP, Isabel Zheng, BS, Chelsea S Pan, BA, et al. (2019, October 11). Effects of tesamorelin on non-alcoholic fatty liver disease in HIV: a randomised, double-blind, multicentre trial. The Lancet. Retrieved online at https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(19)30338-8/fulltext.

Despite Treatment Improvements, Patients Remain Concerned about Lipo

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

In 2016, a lot of attention was devoted to raising awareness about lipodystrophy by the ADAP Advocacy Association — including blogs, webinars, and public comment. Whereas some advocates might see this effort as inconsequential, or even trivial considering the larger ongoing debate about access to care and treatment, it isn't either for the patients living with the condition. HIV-related lipodystrophy is very real, and its impact on the patients living with the condition shouldn't be discounted. In fact, raising awareness about lipodystrophy and treatment for the condition is consistent with our mission to improve access to care for persons living with HIV/AIDS.

HIV-related lipodystrophy can manifest itself as fat loss or fat buildup or both. It isn't uncommon for people living with HIV-infection to express concern about developing facial wasting, belly fat, lipomas, or the dreaded "buffalo hump" on the back of the neck.

Photo Source: Boston Globe

Lipodystrophy can also contribute to certain co-morbidities and health risks, such as too much fat gain in the abdominal cavity increasing the risk of heart attack and diabetes.[1] There are also psychological effects, such as depression, feeling socially isolated, and suffering from low self-esteem.[2]

According to the National Alliance of State & Territorial AIDS Directors' (NASTAD) 2016 National ADAP Monitoring Project Annual Report, approximately 50% of clients on the AIDS Drug Assistance Program (ADAP) are age 45 or older.[3] It is safe to assume that many of these ADAP clients are long term survivors, who probably were prescribed some of the older, more toxic antiretroviral medications. Many of these medication, in fact, have been attributed to HIV-related lipodystrophy.

"HIV long-term survivors are primarily impacted by lipodystrophy because it was a side effect of several of the earlier treatments," said Tez Anderson, founder Let’s Kick ASS. "Lipodystrophy is more than cosmetic. Exacerbated by body shape changes, such as facial wasting or the appearance of a distended stomach associated with excess visceral adipose tissue (VAT) is associated with a variety of health concerns, like diabetes and cardiovascular disease."

According to Anderson, lipodystrophy may increase the risk for comorbidities and may worsen a person’s quality of life and body self-image. "Too many HIV long-term survivors, lipodystrophy is like battle scars from decades of living with HIV. Talking to your doctor about it is important," he argued.

Robert Reed, who is 55 years old and HIV-positive for nearly half of his life, summarized how lipodystrophy impacted his life: "I was in very severe depression and refused to leave my house (unless for doctor's appointments) or go anywhere, until last year's ADAP Advocacy Association annual conference in Washington, DC. Lipodystrophy and the subsequent fear someone may say something about my weight led me to live in isolation for eight long years. Fortunately, I'm now on treatment for the condition."

People newly diagnosed with HIV-infection are also concerned about lipodystrophy, evidenced by a recent submission to TheBody.com's "Ask the Experts" forum:[4]

"Dear Dr. Pierone;
If someone started HAART today with one of the 5 recommended first line regimens, and he did everything else by the book ( stay fit, eat healthy, keep his total cholesterol, HDL, LDL, triglycerides and glucose levels within normal limits), what would be the likelihood (in a rough percentage figure, if possible) that he would develop lipodystrophy after 15-20 years on therapy?
Looking forward to your answer. Thanks a lot for you input, John"

The exact cause of lipodystrophy is unknown. It is estimated that between 10-30% of patients will develop the condition. For years, there's been a common misconception that this condition is just a physical cosmetic issue that is a side effect of earlier HIV treatments — something that must be accepted as a reality of now living longer with HIV-infection. Recent research dispels that myth so that even with newer antiretroviral medications this condition continues to exist. Thus, we will continue our advocacy efforts in 2017 on HIV-related lipodystrophy.

Read our related blogs on this topic:

• Why HIV Medical Treatment Guidelines Matter (published on October 28, 2016)
• Mandating Treatment for HIV-Related Lipodystrophy: The Massachusetts experience and a call for national action (published on August 25, 2016)
• HIV-Related Belly Fat: More Than Just an Appearance Issue (published on June 23, 2016)

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[1] National Institutes of Health (NIH); AIDSinfo.gov; "Side Effects of HIV Medicines"; 2016.
[2] POZ Magazine; "Changes to Your Face and Body (Lipodystrophy & Wasting)"; February 14, 2016.
[3] National Alliance of State & Territorial AIDS Directors (NASTAD); "2016 National ADAP Monitoring Project Annual Report"; 2016; page 19.
[4] TheBody.com; Ask The Experts; "Current Regimens and Lipo"; October16, 2016.

Mandating Treatment for HIV-Related Lipodystrophy: The Massachusetts experience and a call for national action

By: Ben Klein, Senior Attorney and AIDS Law Project Director, GLBTQ Legal Advocates & Defenders

There is a debilitating and disfiguring side effect of early HIV medications that causes profound suffering among our longest-term survivors of the HIV epidemic. For some, it is so severe that they do not leave their homes and become shut-ins, depressed, and suicidal. For others it causes chronic physical pain and structural damage, including spine and neck problems. And for many it is an involuntary public disclosure of HIV, still the most stigmatized health condition in America. Most public and private insurers refuse to cover the simple, inexpensive, and effective medical treatments available to remedy it.

This condition is called lipodystrophy. It is one of the most underappreciated and unattended challenges of the HIV epidemic. Massachusetts just became the first and only state in the nation to mandate insurance coverage for lipodystrophy. And we hope that the experience of the Treat Lipodystrophy Coalition in Massachusetts will become a national model for advocacy and legislation to end this unnecessary suffering.

The word “lipodystrophy” is unfamiliar to many people, even within the LGBT and HIV communities. Lipodystrophy is a consequence of the first wave of HIV medications in the late 1990s, which transformed HIV into a chronic and manageable disease. It is a metabolic disorder characterized by the abnormal distribution of fat in the body. People with lipodystrophy experience a range of disfiguring body shape changes with colloquial names like “buffalo hump” (an abnormal fat pad on the back of the neck) and “horse collar” (abnormal fat growth in the front and side of the neck and under the chin). It also causes severe wasting in the face and limbs. The effects can be devastating.

Several years ago, my organization - GLBTQ Legal Advocates & Defenders (GLAD), a legal group that fights discrimination on the basis of sexual orientation, gender identity and expression, and HIV status - began to hear from people who had been unfairly denied medical care by insurers on the specious grounds that treatment for lipodystrophy is “cosmetic.” It was through representing these individuals in their insurance appeals that I came to fully appreciate the profound physical and psychological harm caused by lipodystrophy – and to understand advocating for treatment as a true life and death matter. What we discovered was that the few people who had the capacity to lawyer up, get letters from physicians and psychologists, file an appeal citing the established medical literature about lipodystrophy, and threaten to sue, were often able to get the medical care they needed. But the very nature of the disease meant that the majority of people suffering from lipodystrophy were unlikely to be able to take on this kind of self-advocacy. It became clear that systemic change was needed.

The path to successful legislation in Massachusetts began with a conversation about the challenge of untreated lipodystrophy with Carl Sciortino, then a state representative and now the Executive Director of the AIDS Action Committee. He first raised the idea of introducing a bill and stepped up to be the original sponsor. At that time, no other legislator had heard of lipodystrophy. Most people in the HIV community, and many physicians treating them, simply assumed that coverage was impossible. Few people even bothered to try.

GLAD formed the Treat Lipodystrophy Coalition, which was made up of people living with HIV, physicians, and HIV advocacy and service organizations. We knew that to have a chance at passing an insurance mandate, we would need to find and present the stories of people whose experience living with untreated lipodystrophy would shock legislators in Massachusetts into understanding this as a critical health care issue. It was a daunting task. The shame and stigma of lipodystrophy is so powerful that many people would not meet with us and still others were not able to come forward publicly.

But with painstaking work, we were able to find a number of courageous individuals who allowed us to share their stories in the form of a book we produced called “Treatment for Lipodystrophy Denied: Sound and Compassionate Healthcare for People with HIV.” Those stories galvanized both legislators and our own community into action. We met a man named John Wallace from South Boston, whose lipodystrophy was so severe that he became hopeless and depressed and never left his home. He told us: “I’ve thought about suicide many times. But it goes against my Catholic faith.” We told the story of Mark S., who described being called “freak” and “monster” just steps from the Massachusetts State House. There is George Hastie, who recounted being denied coverage for a three-pound pad on the back of his neck that resulted in permanent spinal damage. And Andrew Fullem, who described being a “walking advertisement for HIV.”

Our first legislative hearing in March 2014 was a transformative moment. Legislators who had never before heard about lipodystrophy were close to tears. With the storybook and that powerful initial testimony as a springboard, we continued to gain traction throughout 2015 and 2016 - organizing community members, enlisting the support and expertise of respected medical professionals and healthcare agencies, engaging local and statewide media coverage, developing compelling messages and disseminating clear, concise fact sheets to legislators. We had three main messages we hammered away at:

• Cost is the foremost legislative concern with insurance mandates. We countered by demonstrating that lipodystrophy not only affects a very small number of long-term survivors, but also is a fixed and shrinking population. It is an historic problem. And the treatments, generally liposuction to remove excess fat and facial fillers to remedy wasting, are inexpensive. Here’s a postcard we delivered to all legislators:

• We always referred to lipodystrophy as a “disease” that requires medical care to counter the fallacy that treatments are “cosmetic.” Since when do we not treat a diagnosed disease? 

• Refusal to cover lipodystrophy treatments is discrimination. Insurance companies cover restorative procedures for the consequences of other diseases, such as breast reconstruction and testicular replacement for cancer patients. We don’t let insurance companies say that’s cosmetic! Refusing to treat the consequences of lipodystrophy disease is unfair discrimination against people with HIV.

When we began this process, nobody believed we had a chance at passing this bill. We were fortunate to have champions in the legislature, Representative Sarah Peake and Senator Mark Montigny, who took up the cause and pushed for passage. The law will go into effect November 9 (“An Act Relative to HIV-Associated Lipodystrophy Syndrome Treatment,” Chapter 233 of the Acts of 2016).
To be sure, HIV/AIDS advocacy and service organizations have had unrelenting and crucial battles to fight over the decades: access to testing and treatment; prevention, including PrEP and clean needles; discrimination and stigma; and the shameful criminalization statutes that still exist in a majority of states, to name just a few.  But I hope we can all agree that it is intolerable to let our longest term survivors of the HIV epidemic suffer from untreated medication side effects. Here’s hoping that the Massachusetts experience begins a national call to action to address this indefensible insurance discrimination.

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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.

Discriminatory Design: HIV Treatment in the Marketplace

By: Sean Dickson, Senior Manager, Health Systems Integration, National Alliance of State & Territorial AIDS Directors (NASTAD)

The National Alliance of State and Territorial AIDS Directors (NASTAD published a groundbreaking report on the treatment of HIV medications by Affordable Care Act insurance plans available on the Federally-facilitated marketplaces. This report – Discriminatory Design: HIV Treatment in the Marketplace – reveals pervasive deficiencies in marketplace plans’ coverage and pricing of HIV medications.

States and the Centers for Medicare & Medicaid Services (CMS) are currently reviewing plan designs for 2017, and this report will help guide their review to reduce discriminatory plan design for persons living with HIV. The report highlights the direct relationship between drug prices and insurer restrictions, underscoring the need for comprehensive drug pricing reform in addition to monitoring and enforcement of non-discrimination protections.

Key findings include:

• 20% of plans only cover one single-tablet regimen, Atripla, the oldest and least-recommended regimen
• One-third of plans place all covered single-tablet regimens on the specialty tier
• Over 45% of Bronze plans subject all covered single-tablet regimens to co-insurance
• 15% of plans do not cover any HIV drugs introduced since 2013
• 34% of plans place Truvada, which can prevent HIV infection as Pre-Exposure Prophylaxis (PrEP), on the specialty tier
• 29% of plans require patients to “fail-first” on another HIV drug before taking Stribild, a leading single-tablet regimen
• Cost-Sharing Reduction plans, intended to help low-income individuals access affordable insurance, have the same high levels of co-insurance as Silver plans
• Increases in drug list prices lead to increased frequency of co-insurance at statistically significant levels

The full report can be downloaded online at https://www.nastad.org/resource/discriminatory-design-hiv-treatment-marketplace.

Please contact Sean Dickson with any questions at sdickson@nastad.org.

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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.

Finding the right doctor can be challenging—this new service can help

By: Carine Carmy, Head of Marketing, Amino

When you need to find a doctor, how do you find the right one? If you have health insurance, you might start with your insurance plan, and check which doctors are in-network. You might look at online resources, and Google which doctors are located nearby. You might look at Yelp or other review sites to see what people say about the doctors (and if you’re lucky, those reviews might be relevant to your condition or to the procedure you need). If you have a friend or family member with your condition, or know someone with a medical background, you might be able to ask one of them for a recommendation.

Even if you went through all that to find a doctor, would you feel confident that you made the right choice? With all the resources available for health care decision-making, you might still be missing a crucial piece of information: how much experience does this doctor have with what you need?

Research shows that when it comes to doctors, experience matters—not necessarily years of experience practicing medicine, but rather the volume of patients a doctor has treated with your condition. That’s the philosophy behind Amino, a free website that launched in October 2015, which lets you find and book doctors and estimate health care costs for medical procedures. With Amino, you can get matched with a doctor based on his or her experience with the condition you have or the treatment you need. Amino measures a doctor’s experience by analyzing data from health insurance claims (the records doctors send to insurance companies to get paid for what they do) to uncover what they focus on and how they treat their patients.

Below, you can use the embeddable Amino search to see how the product works and find doctors who have experience with HIV-related care and treatment—you can also change any of the search filters to look up other conditions or procedures (Amino has over 800 topics to choose from).

Here are five quick guidelines for using Amino:

1. If you’re looking for doctors who have experience with HIV-related care and treatment, you would first enter in some information about yourself or the patient you’re taking care of.

Photo Source: Amino

2. Then, enter your location and insurance (if you have it—it’s optional to enter in your insurance).

Photo Source: Amino

3. You’ll get a list of doctors who have the most experience with testing people like you—of the same age and sex, and with the same insurance—for HIV-infection. Amino will search its database of 893,000 doctors to provide this list. You might see a variety of doctors in your match list, and depending on your preferences you can filter by a doctor's specialty.

Photo Source: Amino

4. When you click on the doctor’s profile, you can see what they treat patients for and which services, tests, and procedures they provide, along with other important information like their credentials.

Photo Source: Amino

5. From there, you can book an appointment via email or text message at no cost to you.

Amino also offers cost estimates for 49 medical services and procedures for dermatology, diagnostics, men’s health, orthopedics, preventative care, surgeries, and women’s health—and you can view those cost estimates for individual doctors as well as research costs in your area and insurance network.

Health care is not one-size-fits-all—what’s right for you can change depending on your health and your preferences. Your search for a doctor should be customized to your condition or the procedure you need, and you should be able to see as much information about a doctor as possible before making the time commitment to see them in-person.

Using Amino, you get a data-driven and personalized experience, which can help you choose care with confidence. If you have any feedback or questions, please don’t hesitate to reach out to the team at feedback@amino.com.


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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.

Combatting the Dual Epidemic of Substance Use and HIV-Infection

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

Since the earliest days of the AIDS epidemic, there has been a significant link between substance use, abuse, and dependence and HIV-infection. Aside from injection drug use ("IDU") -- which can cause direct exposure to the virus -- substance use, abuse, and dependance "can affect people’s overall health and make them more susceptible to HIV infection and, in those already infected with HIV, substance use can hasten disease progression and negatively affect adherence to treatment."[1]

Photo Source: We Do Recover

According to the CDC, some of the populations most vulnerable populations include people who live in disadvantaged neighborhoods, gay, bisexual and transgender men, people with mental illness, and people who have experienced sexual, physical, or emotional abuse. Among some of the most common substances used are alcohol, crack cocaine, heroin, Methamphetamine ("Meth"), and poppers.[2]

Unfortunately, many prevention strategies -- otherwise known has Harm Reduction -- often fall victim to the political kickball because many right wing conservatives view them as condoning drug use. Also, often the scarcity of available funding in public health can push these programs to the back burner. The lack of prevention dollars has long plagued the fight against the AIDS epidemic, and it is one that continues today (though some progress has been achieved over the last decade in this area).

To that end, earlier this month the National Alliance of State & Territorial AIDS Directors (NASTAD) released a Fact Sheet on ADAP Formulary Coverage of Substance Use Treatment. The fact sheet demonstrates how AIDS Drug Assistance Programs (ADAPs) cover substance use treatment medications, related client services, as well as drug-specific information for medications.[3]

It includes the following sections:

• Substance Use Treatment Needs among PLWH
• Use of Ryan White Part B and ADAP Funds to Expand Access to Substance Use Treatment
• Substance Use Treatment Medications: Drug-Specific Information

NASTAD summarized the important role played by ADAPs: "When used in combination with behavioral therapy, substance use treatment medications allow individuals to manage addiction or dependency by reducing their risk for overdose, cravings, and/or symptoms of withdrawal.  For PLWH who use substances, these treatments bolster multiple “bars” within the HIV care continuum, including adherence to ARV treatment and viral load suppression."[4] 

The fact sheet can be downloaded online at https://www.nastad.org/resource/adap-formulary-coverage-substance-use-treatment.

There is no one-size-fits-all to the prevention and treatment of substance use, abuse, and dependence. One thing is certain though, there isn't enough being done in this area. Resources and tools -- such as the one made available by NASTAD -- are important to community leaders trying to tackle the dual epidemic of substance use and HIV-infection.

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[1] U.S. Centers for Disease Control & Prevention (CDC), "HIV and Substance Use in the Unite," March 2013; available online at http://www.cdc.gov/hiv/pdf/risk_HIV_Substance.pdf.
[2] U.S. Centers for Disease Control & Prevention (CDC), "HIV and Substance Use in the Unite," March 2013; available online at http://www.cdc.gov/hiv/pdf/risk_HIV_Substance.pdf.
[3] National Alliance of State & Territorial AIDS Directors (NASTAD), "ADAP Formulary Coverage of Substance Use Treatment," July 5, 2016; available online at https://www.nastad.org/resource/adap-formulary-coverage-substance-use-treatment.
[4] Bowes, Amanda, National Alliance of State & Territorial AIDS Directors (NASTAD), "AIDS DRUG ASSISTANCE PROGRAMS’ (ADAPS) SUPPORT OF SUBSTANCE USE TREATMENT FOR THE CLIENTS THEY SERVE," July 5, 2016; available online at https://www.nastad.org/blog/aids-drug-assistance-programs-adaps-support-substance-use-treatment-clients-they-serve.

HIV-Related Belly Fat: More Than Just an Appearance Issue

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

Excess belly fat, known in medical circles as VAT (visceral adipose tissue), is a type of hard fat that can affect people living with HIV-infection. Research has shown that between 20% and 30% of HIV-positive patients are experiencing excess VAT. For years, there’s been a common misconception that this belly fat is just a physical cosmetic issue that is a side effect of earlier HIV treatments – something that must be accepted as a reality of now living longer with HIV-infection. Recent research dispels that myth so that even with newer anti-retro viral regimens this condition continues to exist.

Photo Source: Don't Take VAT

"Don’t Take VAT" is an educational initiative supported by the ADAP Advocacy Association, that is shedding light on excess belly fat and the medical complications it can potentially create in order to help people living with HIV-infection learn about the condition, how to identify it, and what questions to ask their doctor. Since VAT is a type of hard fat that can surround a person’s organs and make it difficult for people to do things like bend over to tie their shoes or breath normally, the ramifications of this type of belly fat go far beyond the emotional strain caused by the stigma of carrying VAT. Excess abdominal VAT is also associated with a variety of health concerns, including diabetes and cardiovascular disease, which is why it’s important for patients to talk to their doctor about it.

Far too often, people with HIV believe the doughy fat around one’s midsection can be addressed by a healthy diet and exercise alone. But VAT doesn’t work that way. It can be challenging to reduce VAT with exercise and healthy living alone. The "Don’t Take VAT" website – www.DontTakeVAT.com – includes fact sheets about VAT and healthy living with HIV, as well as a video that provides a deeper look at VAT and tips about what to ask your doctor.

A doctor can determine if a person has excess abdominal VAT by assessing the individual’s medical history and HIV therapy regimen and by measuring around a patient’s waist and hips and calculating waist-to-hip ratio. But this often requires a patient’s willingness to make such a request, as often even doctors mistake VAT for regular belly fat and don’t always conduct this type of assessment during routine medical appointments.

While having excess HIV-related belly fat can cause physical, medical and emotional difficulties, nobody should feel ashamed or embarrassed about it. It is important that you take ownership of your own health and take the first step toward talking to your doctor and examining your treatment option.

ADAP Directory & ADAP Formulary Database Link Stakeholders to Important Tools

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

On March 15th (2016), an important resource was once again made available by the National Alliance of State & Territorial AIDS Directors (NASTAD). NASTAD released its 2016 Online AIDS Drug Assistance Program (ADAP) Formulary Database and accompanying User’s Guide. The Database complements the patient-centric ADAP Directory, which is the ADAP Advocacy Association's flagship program.

NASTAD describes the provider-focused Database as "an online, searchable, publicly available resource detailing state-by-state ADAP coverage of medications both individually and by drug class including HIV antiretroviral (ARV) treatments, “A1” Opportunistic Infections (A1 OI) medications, treatments for hepatitis B and C, mental health and substance use treatment medications, and various vaccines and laboratory tests."[1]

Key findings from the 2016 ADAP Formulary Database include:[2]

• 3 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
• 38 ADAPs cover one or more hepatitis B treatment medication
• 33 ADAPs cover one or more hepatitis C treatment medication
• 19 ADAPs cover one or more of the curative direct acting antiviral (DAA) hepatitis C (HCV) treatment medications
• 9 cover daclatasvir (Daklinza)
• 17 cover dasabuvir, ombitasvir/paritaprevir/ritonavir (Viekira Pak)
• 19 cover ledipasvir and sofosbuvir (Harvoni)
• 8 cover ombitasvir, paritaprevir and ritonavir (Technivie)
• 12 cover simeprevir (Olysio)
• 17 cover sofosbuvir (Sovaldi)
• 43 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
• 14 ADAPs cover one or more substance use treatment medication 

The ADAP Directory – launched in 2014 with ongoing support from AbbVie, Gilead Sciences, Janssen Therapeutics, Merck, ViiV Healthcare, and Walgreens – ensures that people living with HIV-infection have access to the information and resources they need to live healthy and productive lives. The ADAP Directory consolidates useful ADAP-related information from all 50 states and 6 territories into one convenient location for:

• easy access to ADAP resources organized by state and territory;
• updated, current information for all 56 state ADAPs -- including drug formularies; and
• uniform presentation of ADAP information for effective advocacy and easy dissemination.

The “Perfect Storm” that had ravaged the cash-strapped ADAPs between 2008-2010 exposed some very real deficiencies in the amount and quality of information made readily available to patients living with HIV/AIDS. Today, patients...and in fact, all community stakeholders...have much more user-friendly information at their disposal.

Aside from the interactive map, which allows users to navigate all 56 ADAPs, other important resources and tools are available at the ADAP Directory. Among them, patient medication assistance programs and pharmaceutical patient assistance programs.

To learn more about the ADAP Directory, visit http://adap.directory. To learn more about the NASTAD Formulary Database, visit https://www.nastad.org/sites/default/files/2016-ADAP-Formulary-Database-Users-Guide.pdf.
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[1] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.

[2] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.

Co-Paying the Piper

By: Marcus J. Hopkins, Blogger

One of the biggest changes for many lower income patients under the Affordable Care Act (ACA) has been the transition to paying co-pays for their medical care. For patients living with HIV, this has been exceptionally difficult in states whose Ryan White Part B programs – the AIDS Drugs Assistance Programs (ADAPs) – have opted to pay for their clients’ insurance premiums, rather than simply directly paying for services as they’re administered. What this means for patients is that, where they once never had to worry about doctors’ visits or paying for medications, depending on their state of residence, they may not be responsible for paying co-pays for services.

To the average American with a stable, if thinly stretched, income, this may not seem like a big deal; but, to those of us living with HIV/AIDS on fixed or fluctuating incomes, this distinction may create an additional barrier to care that may not have existed, prior to now. It can be difficult to explain to people how, when one’s income is already low, paying $20-$30 for a visit to the doctor requires foregoing other basic necessities such as food or a utility bill put off until later; paying $100 for your HIV medications every month can mean that you no longer have enough to afford rent.

People who live without a chronic disease often fail to see the hardships presented with treating that disease. Outside of simply the cost of treatment, there are additional social and emotional issues at play. Having to rely on government assistance for any reason is frequently derided in our nation as a weakness; a moral failing that renders the recipient incapable of taking care of themselves. As such, there is often a guttural sense of shame and humiliation that accompanies having to rely on these assistance programs. It is this component that is so often left out of the conversation.

More than just the psychosocial aspect of seeking assistance, the reality is that, when a patient discovered their HIV-positive status, they are often unaware of the options that exist, in the way of coverage. Now that people with pre-existing conditions can no longer be barred from insurance coverage, many simply assume that private insurance is the only option available to them. In states where Medicaid services have not been expanded to include coverage for people living with HIV, many patients are unaware of the existence of the Ryan White or ADAP programs that are in place to provide assistance for lower income patients who cannot afford the cost of treatment.

Even with these programs in place, their assistance does not meet the Federal requirement for insurance coverage, and clients whose incomes are higher than the maximum allowed for exemption from the penalty for not having private insurance are often left to foot that bill, as well. This is one of several reasons why many ADAP programs are switching their coverage over to paying for private insurance, rather than a direct payment model.

For lower-income patients still having trouble paying for treatment, even with insurance, Patient Assistance Programs (PAPs) exist that can help to partially or totally defray the costs. These programs are, however, largely unknown to people outside of the “know,” as it were – if you don’t “know” about them, you don’t know about them, and oftentimes, you only find out about them through random word of mouth. Sadly, many ADAP programs’ employees are unaware of these programs, and aren’t able to provide adequate information about either their existence or the requirements for applying.

One such program – the Patient Access Network (PAN) Foundation – has long served this purpose for people who are underinsured living with HIV. The maximum award level is $7,500 per year. Patients may apply for a second grant during their eligibility period subject to availability of funding.

Unfortunately, funds available through this program have been depleted. As of March 14th, 2016, patients seeking assistance for HIV are being encouraged to go to the Patient Advocate Foundation (PAF) for assistance. Individuals who have been recently approved for grants through the PAN Foundation will not be affected. When needing additional assistance or to re-enroll, individuals are encouraged to check back with PAN to determine if the fund has been re-opened and/or to seek additional support through PAF.

While the funds at PAN for HIV assistance have been exhausted for 2016, there are still funds available for patients who are mono- or co-infected with HCV at both PAN and PAF; one only needs to apply separately for assistance with that specific condition, as funds for HIV drugs do not carry over to HCV without an additional application.

Additionally, it should be made clear that these programs are not designed for the uninsured; rather, they are designed for the underinsured – those who carry some form of insurance, but for whom co-pays are unaffordable. It is also crucial to understand that these programs cover only the costs associated with drug co-pays; office visits and other non-pharmaceutical costs are not covered, and are left up to the individual and/or the Ryan White funds allocated to their clients.

For more information about PAF, and how it differs from the Patient Advocate Foundation, please visit www.patientadvocate.org.

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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. 

The 'Magic City' Embodies the Denver Principles

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

Birmingham is largest metropolitan city in Alabama, and its deep rooted history earned it the nickname, "The Magic City." Once a bustling manufacturing hub in the South, it is now recognized nationally for some of its leading medical research. Unfortunately, Alabama -- like most states in the Deep South -- has been disproportionately impacted by HIV/AIDS. Yet, thanks to organizations such as AIDS Alabama, there is a vibrant grassroots advocacy community fighting to raise awareness, advance linkages to care, and promote the ideals embodied in the "Denver Principles."

Photo Source: POZ.com

The ADAP Advocacy Association (aaa+^®) is committed to keeping the patient perspective at the center of its advocacy and educational activities, especially at the local level. After all, all HIV/AIDS organizations -- whether it is a advocacy organization, think tank, or service provider -- exist to promote greater patient health and wellness. Isn't that what the Denver Principles were all about, even as a movement that is still evolving?

(Editor's Note: Please read Larry Bryant's 2013 blog, Will The Denver Principles Ever Be Relevant To Black People Living With HIV & AIDS?)

To that end, aaa+^® again this year will host regional summits designed to gather community input on the AIDS Drug Assistance Programs (ADAPs). Community input at the local level is essential to improving access to care and treatment for people living with HIV/AIDS as the Affordable Care Act (ACA) continues to be implemented across the nation. With some of the ongoing challenges facing people living with HIV/AIDS under the ACA, it is important for the advocacy community to share their insight and perspective.

There will be a regional summit held in Birmingham, Alabama on April 15th. It is being held in collaboration with AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more about the ADAP Regional Summit in Birmingham, or to register for this important community event, go to http://adapadvocacyassociation.org/events.html. 

The Unaffordable No-Care Act: Why the ACA has outlived its usefulness

By: Sue Saltmarsh, Blogger

Despite the spin of the White House and most Democrats, when you look at the goals of the Patient Protection & Affordable Care Act (otherwise known as the Affordable Care Act, or ACA) compared to the realities people are facing every day, you will find that the ACA, or Obamacare as it’s called, has failed in all but a few of its original intentions. The reasons for this failure are many, but ignoring it on one side and squawking, “Repeal and replace!” on the other does nothing to address the truth. The ACA has failed because it wasn't enough; not brave enough to confront the greed of insurance companies, not visionary enough to change the way we approach healing in this country, and certainly not compassionate enough to actually help the people who needed it most. Bottom line – it “protects” profit, not people, and is only affordable for those who can already afford to pay.

Photo Source: The White House

There are five things the ACA has inarguably achieved:

• The elimination of the onerous “pre-existing condition” clause
• The end of lifetime caps on benefits
• No more charging women more than men
• Eliminating age-based discrimination
• Enabling children to be included on their parents’ policy until age 26

It has also achieved:

• The growth of insurance company profits
• The decrease of access to care even among those who are insured
• The increase of out-of-pocket costs
• The increase of the number of people who are underinsured

The “why” of it
There are probably more reasons why we’ve come to this crisis in healthcare than any of us could know, but to me, it comes down to two things. First, then-Senator Obama made the mistake of leaving the authorship of healthcare policy to academics, think-tankers, and so-called economists with no input from the People or a variety of medical providers. I know this because the policy was already written when I accepted the invitation to serve on his campaign’s Healthcare Policy Committee thinking I could contribute to the creation of a single-payer system. Instead, it soon became clear that no input was welcome – our job was to sell what had already been written to the voting public.

Secondly, whether you approve of him or not, I believe that Barack Obama went into the “negotiations” of writing the legislation in a room filled with Republicans and healthcare industry hit men out for blood, when he naïvely assumed that they were there in good faith, as he was. Instead, he had to settle for what he could get and he got no help from his own party or the voices of single-payer advocates, who weren’t even allowed in the room.

Couple that rocky start with the blatant obstructionism of racist Republicans and the ACA became a shell of what it was intended to be. The medical industrial complex got a pathway to more riches and the ability to justify mergers which are now creating monopolies the kind of which may bring Teddy Roosevelt back from the dead (not a bad idea for a new zombie-themed TV show!). And the People? We got royally screwed.

The true cost
Back in 2012, I went through the process of calculating the cost to me if my employer dropped our insurance and I was forced to go to the “marketplace” (doesn’t that sound quaintly friendly like you put on your gingham and sling your hand-woven basket over your arm and go to market?). As the insurance companies began to publish charts of what their plans would provide for what cost, there was nothing close to the $120 premium with a $500 deductible and, at that time, no co-insurance that I was paying with my employer-based Blue Cross Blue Shield insurance. OK, so what about a subsidy? My income was low enough to qualify for one, but as it turned out the $230-some I would get wouldn’t even put a dent in the $675 premium and $1500 deductible, higher co-pays, and co-insurance that left me holding the bag for 20% of everything. I resolved right then and there not to ever buy that kind of raw deal. And just let them try to pry that punitive fee for not having insurance out of my cold, dead hand.

Since that investigation, I’ve Iost my job, my incurable (except by a transplant) liver disease has progressed, and I’m now gratefully on Medicaid, which I guess I’m supposed to be ashamed of. But like single-payer, I’ve paid into the Medicare/Medicaid fund (1.75% of my wages) my entire working life and now that I need it, it’s there for me. I never have to pay a premium, never have to meet a deductible before insurance will pay a penny, never have to postpone an appointment or prescription refill because I don’t have the co-pay, and never have to spend hours on the phone fighting insurance company bureaucrats to get the bills paid. It has its downside – narrow networks and I’m limited to making $13,300 per year to keep it, but that gives me time to run my organization and help get Bernie elected so everyone can enjoy unfettered access to the same level of healthcare, no matter their economic reality.

The HIV/AIDS community and healthcare
Even before the ACA, the HIV/AIDS community was smart enough to demand a system whereby those in need could get the drugs they must have to survive – ADAP. But ADAP, like the ACA, is at the mercy of the appropriations process of Congress and as evidenced by Trump’s success, hatred and discrimination is trending on the Right and has always been behind the attempts to strip the ACA of anything that would cut into the profits of the insurance companies. If the Louie Gohmerts, Diane Blacks, and Ted Cruzes become the majority with Trump in the White House, imagine the potential harm to Ryan White, including ADAP.

Universal, single-payer healthcare would be publically funded, not victim to the appropriations process. And, life-saving as it’s been, ADAP will no longer be needed because every person living with HIV will get the care and drugs they need at no cost to them except the 2.2% (Bernie’s plan) or 3.75% (H.R. 676) most (making under $250,000) will pay out of their paycheck.

The dedicated activists who’ve watched over all things ADAP since its inception will be free to turn their commitment and skills toward the many other HIV-related issues that need strong, knowledgeable voices – transgender discrimination; prevention; training for both current providers in underserved areas and a new generation of HIV specialists; research involving women; job, housing, and employment discrimination; disability rights, etc., etc.

The ACA is a wolf in lamb’s clothing and unfortunately, the majority of the American public, including those living with HIV, don’t see past the costuming. It’s one of my deepest disappointments that HIV/AIDS community leaders have chosen to perpetuate the myth of the ACA as “the solution” or to parrot the defeatist cynicism of “It’s a nice idea, but it will never happen.” You are the people who showed us the impossible could happen, that unleashing the power of the united people could make big pharma and the FDA do what you wanted and move the government to not just acknowledge you, but legislate in your behalf. You proved that activism CAN work. So why would you not be in this fight?

As people who are getting sicker, even dying, people who have become bankrupt, even homeless, and those who have lost loved ones begin to coalesce around the injustice of the profit-driven system we have now, I hope the long-term survivors will guide a new generation of activists to ignite the spirit of ACT UP and join the rest of us in fueling the political revolution we’ll need to get this done. This country will never be lacking in wrongs to right and problems to solve, but it would be awesome to be able to check healthcare off the list.

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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. 

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.

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. 

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.

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.

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. 

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!