Thursday, January 17, 2019

Safe Medicines in the United States aren't a Guarantee

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

In 2019, prescriptions medicines in the United States are not immune from the increasing dangers associated with counterfeit drugs. In fact, it can be a serious issue. Dating back to the start of the HIV/AIDS epidemic in the United States, it is an issue that has also resulted in Black Market HIV/AIDS prescription medicines falling into the unknowing hands of HIV-positive consumers. Therefore, raising awareness about counterfeit drugs and the dangers associated with drug importation is an issue the ADAP Advocacy Association takes very seriously.

On January 31st, we are proud to sponsor a series of Congressional Briefings on counterfeit medications  which are being hosted by The Partnership for Safe Medicines ("PSM"). It is an issue that has impacted me, personally, and why I penned an Op-Ed in the Washington Blade last year on the inherent dangers (Drug importation policy is a hard pill to swallow).

I ordered medications from an online Canadian pharmacy. To this day, I have no way of knowing where the drugs were made or if they contained the active ingredients I needed to effectively treat my condition.

Counterfeit medications affect all patients: patients with acute diagnoses, patients with chronic conditions, and patients with immunodeficiency. A patient who has an acute bacterial infection needs a legitimate antibiotic with a proper dose to kill the bacteria and is endangered by the rebounding infection caused by a counterfeit that is beneath sufficient dosage. A patient with a chronic condition who needs maintenance medications may weaken and worsen if their maintenance meds are substandard in dosage. Patients with immunodeficiency may end up with serious additional infections if medications they take have not been sourced and stored in sterile conditions.

HIV patients may suffer all of these things at the hands of unscrupulous drug counterfeiters. Come to PSM's Congressional Briefings to hear the stories of counterfeit medicine victims, including an HIV patient, who received counterfeit drugs that impacted his health. Upcoming legislation proposals to bypass the U.S. Food and Drug Administration's safety protocols and import medicine from foreign sources that can neither be verified nor regulated will have profound affect upon all of the populations of patients who depend upon safe, accurate medicine to maintain their health.

HIV red ribbon next to spoon filled with Rx medicines
Photo Source: Community Access National Network

Black Market HIV/AIDS prescription drugs have been in the news for many years. In fact, several years ago PSM published an important report in collaboration with the Community Access National Network ("CANN"). The PSM-CANN report outlined numerous instances of counterfeit drugs in the HIV/AIDS drug supply change between 2006 and 2013. Download the report online.

Register today to attend either the free House breakfast event at 9 a.m., or the free Senate lunch event at 12 p.m., on January 31, 2019 in Washington, DC.

Friday, January 11, 2019

Sometimes Circumstances Dictate 'Positive' Change

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

Happy New Year! With a new year comes new beginnings and very often it dictates needed change. The ADAP Advocacy Association is seeking to make some 'positive' (pun intended) changes to its HIV/AIDS advocacy agenda this year, especially in light of the current political environment.

Positive Change Ahead
Photo Source:

The current occupant residing at 1600 Pennsylvania Avenue has turned HIV/AIDS advocacy on its head, some of which impacted the AIDS Drug Assistance Program. Federal public policy is undergoing a lot of upheaval so many of the planned changes being implemented by our organization reflect the need to better engage local advocates at the community level. These changes will be periodically announced throughout the year, but this week's blog will highlight a few of them.

Our ADAP Blog will feature a monthly guest blog by advocates living with HIV/AIDS, whereby they will share their personal advocacy journey fighting the epidemic. Two such guest blogs were shared last year, by Wanda Brendle-Moss and Michael Zee Zalnasky. The guest blogs seek to share some valuable lessons learned by advocates.

Our Annual ADAP Conference will be replaced by numerous HIV/AIDS Fireside Chat Retreats, convened across the country. Two such Fireside Chats were held last year in Tampa, Florida and Boston, Massachusetts. Our Fireside Chats convene key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. Patient advocates will continue to play a central role during these important discussions (with advocacy scholarships offered).

We will be re-convening our ADAP Advocacy Council (details forthcoming). Additionally, we will seek to leverage existing community partnerships with AIDS Service Organizations to better engage local advocates on Federal public policy issues. We anticipate 2019 being another challenging year for the HIV/AIDS community, but we're taking steps to ensure our advocacy remains relevant and effective.

Thursday, December 13, 2018

HIV/AIDS Fireside Chat Retreat in Boston Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Boston, Massachusetts among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. The Fireside Chat took place on Thursday, November 8th, and Friday, November 9th, and it built on the previous retreat held in Tampa, Florida earlier in the year.

FDR Fireside Chat
Photo Source: Getty Images

The Fireside Chat included a series of three moderated white-board style discussions about the following issues:
  • HIV & Aging
  • Drug Importation
  • Ryan White Program Reauthorization
Each of the white board discussions was facilitated by a recognized content expert followed by an in-depth dialogue among the retreat attendees. The discussions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat.

The following represents the attendees:
  • Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome)
  • William E. Arnold, President & CEO of the Community Access National Network (CANN)
  • Marcus Benoit, Ryan White Regional Liaison & Eligibility Coordinator, Houston Regional HIV/AIDS Resource Group, Inc.
  • Brandon Cash, Theratechnologies
  • Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center
  • Tishna Dhaliwal, Director, Healthcare Policy & Strategy, Johnson & Johnson
  • Edward Hamilton, Executive Director & Founder of ADAP Educational Initiative
  • Hilary Hansen, Executive Director, Advocacy & Strategic Alliances (US) at Merck
  • Stephen R. Hourahan, Executive Director, AIDS Project Rhode Island (APRI)
  • Lisa Johnson-Lett, Treatment Adherence Specialist / Peer Educator, AIDS Alabama
  • Brandon M. Macsata, CEO of the ADAP Advocacy Association
  • Julie Marston, Executive Director, Community Research Initiative (CRI)
  • Tim Miley, Associate Director, State Government Affairs – Northeast, Gilead Sciences
  • Theresa Nowlin, advocate
  • David Pable, Community Co-Chair SC HIV Planning Council
  • Samantha Picking, PharmD, RPh, AAHIVP, Healthcare Specialty Supervisor, Walgreens
  • David Reznik, Chief, Dental Medicine, Grady Health System Infectious Disease Program
  • Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
  • Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines
  • Carl Sciortino, VP of Government & Community Relations, Fenway Health
The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

HIV & Aging:

The discussion on HIV & Aging was facilitated by Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome) based in San Francisco, CA. Anderson has coined the phrase, AIDS Survivor Syndrome, to address the litany of issues facing HIV/AIDS long-term survivors. Adults over 50 make up the majority of people living with HIV/AIDS in the United States. By 2020, it will increase to 70%. According to Anderson, "Aging populations present challenges to the healthcare system, and providers are ill-prepared for an aging population. We are going to have be creative in devising new strategies for providing integrated HIV and geriatric care, and for meeting the long‐term needs of clients with increasingly complex needs."

Since aging with HIV is not a monolithic, retreat attendees dived into accentuated aging, living with co-morbidities, HIV-related enteropathy and/or peripheral neuropathy, as well as other issues affecting quality of life for the aging HIV population.

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Tez for facilitating this important discussion.

Drug Importation:

According to Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines, there are a wide variety of options for addressing financial impediments to healthcare access. The healthcare supply chain is convoluted and two people that receive the same treatment, test, or medicine often pay wildly different amounts. Not all of these are equally safe for patients.

Shabbir challenged the retreat attendees with a series of questions. First, we must understand the supply chain. How does it work in the US vs other countries? When it fails, how does it fail? What examples of failure exist that we can learn from? How do counterfeits get into our supply chain? Is our drug supply safer or more polluted than other countries? Why is that?

The discussion about the dangers involved with drug importation, including what exactly is the risk of patients breaking the supply chain? Is it just a loss of financial resources? Is a counterfeit that's just a placebo really that dangerous? And beyond the potential dangers, then other issues emerge when obtaining medicine from other countries domestic drug supply. Do they have shortages of their own? Are there other countries large enough to supply medicine to us?

The retreat attendees were also asked, so what's the answer? Can we judge different proposals on the basis of patient safety? Is there any time we want to sacrifice patient safety for access?

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Shabbir for facilitating this important discussion.

Ryan White Program Reauthorization:

The discussion about underserved communities served (or potentially served) by the Ryan White Program was facilitated by Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. The world has changed since the 2009 reauthorization, as Jeffrey noted during this discussion. Research trials definitively have confirmed the benefits of immediate treatment, and the clinical guidelines have also changed. The use of care continuum and monitoring of durability of viral suppression continue to highlight gaps in care. The enactment of the Affordable Care Act (32 states and 62% of the HIV population lives in states that have expanded Medicaid) has changed the healthcare landscape. The 340B Drug Pricing Program is under pressure.

Some of the emerging issues/needs identified included the ongoing role of Ryan White in larger insurance system; early treatment and rapid start of ART/better supports for re-engaging people in care; addressing the needs of an aging HIV population; role of Ryan White in covering PrEP and PEP; Ryan White as a model for or its role in curing HCV and addressing the opioid crisis; and new technology is coming: preparing for long-acting agents.

Finally, Jeffrey led an all important dive into the risks in not reauthorizing versus the risks in reauthorizing the Ryan White Program. The Democrats regaining control of the U.S. House of Representatives certainly changes the dynamics surrounding possible reauthorization. 

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

Additional Fireside Chats are planned in 2019.

Thursday, December 6, 2018

Transgender Reflection & Remembrance

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

The ADAP Advocacy Association would like to honor our transgender brothers and sisters by recognizing the tragic losses, as well as victorious gains affected populations experience throughout the year.

In light of the New York Time’s report the Trump administrations is seeking to create a unified, yet exceptionally limited definition of “sex” to the exclusion and limitations of civil right protections for transgender people, we’d like to recognize our industry partners who vocalized opposition to this move.

Transgender Awareness
Photo Source:

In addition to ongoing work in policy and grants support the following actions were taken by key industry partners:
With the recent observance of the annual Transgender Day of Remembrance (November 20th), this year, in the United States, 22 documented transgender people were murdered and countless transgender lives lost to suicide. We take the time to honor the lives of our community’s losses and encourage our partners to join us and their local communities in recognizing these lives and the struggles transgender people face every day.
  • Christa Leigh Steele-Knudslien, 42, was the first known case of deadly violence against the transgender community in 2018. A local news outlet reports that she was found dead in her home on Friday night in North Adams, Massachusetts. She was a trans beauty pageant organizer. According to reports, Leigh Steele-Knudslien's husband, Mark, turned himself in Friday night, admitting to killing his wife. January 8, 2018.
  • Viccky Gutierrez, 33, is the second reported transgender person killed in the United States in 2018. She died after being stabbed and her apartment in Los Angeles was set on fire while she and her dog were trapped inside. Kevyn Ramirez, 29, of Los Angeles was charged with murder and arson after admitting to stabbing Gutierrez in her home after a dispute and then setting fire to the apartment January 12, 2018.
  • Tonya Harvey, 35, is the third known transgender person to be murdered in 2018. Harvey was shot to death shortly before 5:30 pm in Buffalo, New York.
  • Celine Walker, 36, was shot to death in Jacksonville, Florida on February 4, 2018. Sources claim that Walker's body was found with fatal gunshot wounds in an Extended Stay America hotel at about 8 p.m. and pronounced dead at the scene. Additionally, Walker's family and friends publicly shared their disgust toward Jacksonville Sheriff's Department and the Florida Sun Times-Union misgendering her
  • Phylicia Mitchell, 45, was shot in the chest around 6 p.m. outside her home on West 112th Street near Detroit Avenue, in the Cleveland's Edgewater neighborhood.
  • Zakaria Fry, 28, was found dead in the town of Stanley, New Mexico, on February 19, 2018. She went missing in New Mexico in mid-January, and her body was later found 40 miles outside of Albuquerque on February 19. Rancher Fidel Montoya found one body in a trash bin along the road, and another body was recovered about two miles away. Police confirmed them to be Fry and her roommate Eugene Ray on Tuesday, February 27, 2018.
  • Amia Tyrae Berryman, 28, suffered multiple fatal gunshot wounds outside of a motel in East Baton Rouge, Louisiana on March 26, 2018.
  • Sasha Wall, 29, is the eighth known transgender person to be murdered in 2018. Sasha was fatally shot on April 1 in Chesterfield County, South Carolina. Her body was found with multiple gunshot wounds and slumped over her car's steering wheel on Sunday, April 1, 2018.
  • Carla Patricia Flores-Pavon, 18, was strangled to death in her Dallas apartment May 9
  • Nino Fortson, 36, a transgender man fatally shot multiple times during an argument May 13 in Atlanta.
  • Antash'a English, 38, known to friends as Antash'a, died June 1, 2018 in Jacksonville, Florida
  • Gigi Pierce, 28, a transgender woman fatally shot dead in a hotel on the Southside of Jacksonville, Florida on June 24, 2018.
  • Diamond Stephens was 39 years old Black transgender woman who was shot to death on June 18 in Meridian, Mississippi.
  • Keisha Wells,was 54, died in a parking lot due to a gunshot wound to the abdomen on June 23 in Cleveland.
  • Sasha Garden was 27-year-old transgender woman, was found dead in Orlando on July 19
  • Dejanay Stanton was 24, was shot to death early in the morning of August 30 on the south side of Chicago
  • Vontashia Bell was 18, suffered a fatal gunshot wound August 30 in Shreveport, Louisiana
  • Shantee Tucker was 30, was shot to death September 5 on a Philadelphia street by someone firing from inside a pickup truck.
  • London Moore was 20, was found shot to death September 8 in North Port, Fl.
  • Nikki Enriquez was 28, of Laredo, Texas, was found dead near Interstate 35 in south Texas September 15.suspect is Juan David Ortiz.]
  • Ciara Minaj Carter Frazier age 31, of Chicago, Illinois, was found dead with stab wounds on October 3, in the West Garfield Park neighborhood.
The ADAP Advocacy Association remains committed to providing valuable resources to better serve and advocate for transgender people affected by HIV. Community & industry partners interested in learning more about implementing Transgender advocacy policy recommendations and action can contact us at

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

Thursday, November 29, 2018

Can The HIV Community Beat President Trump?

Guest Blog By: Josh Robbins,

Reprinted with Permission from Josh Robbins,

How to continue to survive Trump if you are living with HIV

Photo of President Trump with fire burning in the background
Photo Source:

The Trump Administration is weirdly disinterested in the HIV epidemic in the US. And that’s the biggest understatement that I have ever written. 

President Trump fired the remaining members of the Presidential HIV Council one year ago. The Office of National AIDS Policy has been empty since the beginning of his administration. (I called the day Trump was inaugurated to see if the office was still open and I left a voicemail. I have not received a return call. Shocker!?!?)

Money intended for funding the US fight against the epidemic at home and internationally has been chipped away and it appears that HHS is just trying to be quiet about it all—almost fly under the radar. Who can blame them? They are probably doing the best thing at the moment, honestly.

I inquired to HHS about PACHA (Presidential Advisory Council on HIV/AIDS) and the status of Kaye Hayes.

Here were my questions: 
  • Is Kaye Hayes still the executive director of PACHA?
  • How many members are currently on PACHA? Who are they?
  • What is the current status of PACHA?
  • When was the last time that PACHA provided guidance or input to the administration? Can I receive a copy of that?
  • When is the next planned meeting?
  • And if no members are currently on the council, is there any guidance being given to the current administration? If so, by whom?
Here’s the official response by the HHS spokesperson: 

“Kaye Hayes is still the executive director of Presidential Advisory Council on HIV/AIDS (PACHA), as well as Deputy Director of the HHS Office of HIV/AIDS and Infectious Disease Policy. In response to your other questions, we do not have any new information to share with you at this time, but we will contact you as soon as we do.”
Photo Soure:

I interpret this as no news. And silence. Not good!

This Is Not Going Well

When you think about the administration’s ‘less than friendly’ welcoming of immigrants and those seeking asylum in the U.S., or those visiting from other countries and remembering the nightmare Trump has put many through by changing travel rules and instituting immediate travel bans—it’s just so damn overwhelming. Honestly, I can’t even remember all the bad stuff.

Here’s the real tea about it: It’s only been two years! Can we all make it two more years?

YES! Yes, we can. And we will.

When Trump became President, I wrote about the best ways for us all to survive. Other popular websites in the HIV space called it the Trump-apocalypse.

So, how we continue to survive this administration?
  1. We are not the victims. We are must never view our advocacy as such. We are strong, healthy, and marginalized. But we will survive!
  2. We must engage the administration at every opportunity—not just complain. We were caught off our game when he was elected. We better prepare better for the 2020 election. 
  3. We must have a message of hope, based in science and demonstrate what we are advocating for—to live well. #UequalsU
  4. We still need to support national ASOs and organizations like ADAP Advocacy Association. 
  5. We need some of our leadership to change. We must identify new leadership to be our community voices. And we must stop allowing a small caucus to say they speak for us when they have missed the boat largely with U=U. 
  6. We must lean on each other when we need it. Sean McKenna calls it a buddy program. Get a buddy!!! 
  7. We must recognize disparities and work together to end them… and we must make room at the table for others who have been silenced or ignored. But we must not allow this to drive wedges within our community. We need to work together as one unit! 
  8. We need to ask for personal help when we need it. We are advocates and many are long term survivors. But we must allow our pride to disappear when we need help.
It has been a hell of two years, but it’s been a hell of an epidemic and we are going to make it!

I love you all!

Let’s do this!!!

[Check out the original blog post by Josh Robbins online at]

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

Thursday, November 8, 2018

Three Red States Expand Medicaid – What That Means for ADAP

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

The 2018 midterm election was remarkable in several ways: over 47% of registered voters participated in this election – the highest turnout since 1966 which saw 49% (Domonoske, 2018); the Democratic Party regained control of the House for the first time since 2011; a record number of women won seats in the House (Watkins, 2018); two women became the first Native American women elected to Congress (Watkins); two other women became the first Muslim women elected to Congress (Watkins); Jared Polis became the first openly gay man to be elected governor of a state in Colorado. But something else historic happened, as well – Idaho, Nebraska, and Utah joined Maine in begin the only states to expand Medicaid under the Affordable Care Act (ACA) via a ballot initiative (Pramuk, 2018). And these states are pretty deeply Red.

Governor Paul LePage
Photo Source: Political Dig

For those unfamiliar with Maine’s Medicaid debacle, here is a quick rundown: Maine votes adopted a Medicaid expansion via a ballot initiative in November 2017 which required the submission of a state plan amendment within 90 days and implementation within 180 of the measure’s effective date (which would have been April 03, 2018). Maine’s famously cantankerous and curmudgeonly outgoing Governor Paul LePage (see pictured above) – who vehemently opposed expanding Medicaid – failed to meet that deadline, illegally ignoring the will of the voters – he famously stated he would go to jail before allowing Maine to expand Medicaid (Miller, 2018), and took the issue to court where he has been repeatedly smacked down by judges who insist that he comply with the law and implement the expansion. Governor-Elect Janet Mills – who campaigned on following the law and authorizing the Medicaid expansion and was elected in the 2018 midterm elections – appeared in court on Wednesday, November 07, to listen to arguments in an advocacy group’s case against the Maine Department of Health and Human Services (Bleiberg, 2018).

What is troublesome about the myriad refusals of LePage to abide by the law is that it may have just been a prelude to how Republican governors in these Conservative states may attempt to thwart the will of the voters in Idaho, Nebraska, and Utah. To be fair, two of these governors has in some capacity stated they will abide by the will of the voters: Governor-Elect Brad Little (Idaho) has stated that he will implement the initiative (Guilhem, 2018); Governor Pete Ricketts – just elected for a second term – though a vocal opponent of the measure, has previously stated that if expansion made it onto the ballot, it would be up to the voters (Quinn, 2018). Governor Gary Herbert of Utah vocally opposed Utah Proposition 3, which not only orders the expansion of Medicaid, but implements a prohibition against any changes that would reduce coverage, benefits, or payment rates below policies in place on January 01, 2017.

While these responses are not full-throated endorsements of expansion, they are likely the best we can expect from members of a political party that has vehemently opposed the expansion of Medicaid at almost every turn. The problem with their opposition, however, is that Medicaid expansion – and, in fact, Universal Healthcare in general – are highly popular; even amongst Republican voters, support for Universal/Single-Payer/Medicare-For-All healthcare provided by the government is growing steadily as healthcare costs continue to rise well above the rates of inflation and wage growth.

So, what does Medicaid Expansion mean for the AIDS Drug Assistance Program? Well, a few things:

What we have seen in states that implemented Medicaid Expansion under the ACA is that a significant percentage of ADAP/Ryan White recipients have been shifted off of the Ryan White Program and over to Medicaid. This has had various impacts, both positive and negative, for those who have traditionally relied upon Ryan White and ADAP for payment and coverage of the HIV treatment and medications. Depending upon the way the patient’s state implements Medicaid, they may now be required to pay premiums, deductibles, and/or co-pays for doctor visits and medications that were previously covered by Ryan White and ADAP. That said, Ryan White funds canbe used to cover those costs (HIV/AIDS Bureau, 2014).

Patients living in states that have not expanded Medicaid often have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage, even if they meet the income threshold. Additionally, certain states may also require that patients’ Viral Load or CD4 T-Cell numbers meet a specific threshold, as well, meaning that, if a patient’s Viral Load falls below or CD4 T-Cell count rises above the designated threshold for approval, they may lose their eligibility for coverage. This was my case in West Virginia before the state expanded Medicaid. Expanding Medicaid means that people living with HIV no longer have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage (so long as their income is below the threshold).

The shifting of these patients off of Ryan White ADAP budgets has resulted in lower expenditures on drugs and other HIV treatment costs, which allowed the Ryan White Program to begin providing payment for private health insurance for all Ryan White clients using Ryan White funds through insurance assistance. Only three states do not provide this service – Texas, Idaho, and Mississippi. With the expansion of Medicaid in Idaho, this may allow the program the resources to begin doing so.

In order to shift clients off of Ryan White and onto Medicaid, a client’s income must fall within the specified percentage of the Federal Poverty Level (FPL) respective to each state’s guidelines. In most expansion states, that threshold is 138% of the FPL ($16,753.20 per year for an individual). This percentage for eligibility for Ryan White ranges from 200% (Idaho, Iowa, and Texas) to 550% (South Carolina), which is much more forgiving than the Medicaid requirements.

An additional issue can arise with patients who have been shifted onto Medicaid, as well. While the Ryan White Program was designed solely to focus on the needs of people living with HIV, Medicaid – which is the largest payor for HIV services in the United States – was not designed specifically with the needs of HIV patients in mind. There may be something of a barrier to care and treatment that exists when patients who are used to dealing with Ryan White staff who are familiar with the social, psychological, and medical needs of HIV patients are suddenly expected to communication with Medicaid employees who may not be sensitive to or accommodating of the unique needs of people living with HIV. While it may seem small, that simple communication barrier can lead to lower adherence to medication regimens, missed appointments, and falling out of the continuum of care. The National Alliance of State and Territorial AIDS Directors (NASTAD) holds numerous Technical Assistance conferences and meetings throughout each year where Medicaid directors and staff can attend various workshops and plenary sessions that teach them better ways to approach people living with HIV and to increase cultural competence when dealing with this population.

In general, Medicaid expansion has been a boon for the Ryan White and ADAP Programs. Hopefully, the transition to expanded Medicaid coverage in Idaho, Nebraska, and Utah will be smooth, and people living with HIV will gain access to more options to treat their disease and lead happier, healthier lives.


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

Thursday, November 1, 2018

HIV Patients Co-Infected With HCV Face Higher Mortality Rates

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

Reprinted with Permission from the Community Access National Network

A ten-year follow-up study has found that people living with HIV who are co-infected with Hepatitis C (HCV) face an increased risk of mortality by 4.3%, even when receiving treatment for HIV (Bender, 2018). The same study found that treatment with HCV Direct-Acting Antivirals (DAAs) resulted in a lower risk of mortality than those whose HCV went untreated, but that the harm caused by HCV still resulted in increased risk.

'Sensational' Hep C Response Rates in HIV Coinfection Trial
Photo Source:

One of the primary consequences of untreated HCV infections is damage to the liver – damage that is no immediately repair itself once the virus is successfully treated. Liver fibrosis – scarring of the liver that prevents the organ from properly functioning – is not healed by HCV treatment, and depending upon the severity of the scarring, the liver may never completely regenerate. Those whose livers are cirrhotic – those with late-stage liver scarring – will likely never fully recover optimum liver function and may become dependent upon other prescription medications and dietary restrictions to aid in liver functions such detoxifying substances in the body, purifying blood, and making vital nutrients (Welch, 2017).

This issue is one that receives far less attention than it deserves and is part of why there is so much opposition against including Fibrosis Scoring in treatment determinations. While it may seem financially prudent in the short-term to limit treatment of HCV to those who are “sick enough” to be treated, the long-term negative health impacts of liver scarring are far costlier in the long-term. For those living with HIV, liver function is of critical concern as that is where most HIV medications are metabolized. If liver function is impaired, the drugs may not properly metabolize, making the treatment of HIV less effective.


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.