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.

Photo Source: Stopstreetharassment.org

In addition to ongoing work in policy and grants support the following actions were taken by key industry partners:

• Gilead celebrated Transgender Awareness Week by issuing a distinct statement reinforcing support of the transgender community
• Johnson and Johnson, Glaxso-Smith-Kline, and ViiV Healthcare signed on to the industry statement in entitled “Businesses for Transgender Equality”

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 info@adapadvocacyassociation.org.


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.

Do Consumers Deserve Rx Savings? (Part 2)

Guest Blog By: Marcus J. Hopkins, Blogger 

In last week’s guest blog, Do Consumers Deserve Rx Savings?, I discussed the various issues surrounding pharmaceutical pricing, as well as the possibility of the Centers for Medicare and Medicaid Services (CMS) switching where drug rebates are applied by requiring sponsors to pass on a minimum percent of the cost-weighted average of rebates on to consumers. Essentially, who deserves the drug rebates more: health insurance companies, pharmacies, and pharmacy benefit managers (PBMs), or consumers?

Photo Source: prweb.com

In November 2017, CMS put out a Request for Information (RFI) about a proposed rule that would revise the Medicare Advantage program (Part C) and the Prescription Drug Benefit program (Part D) that would require payors to pass on a percent of the drug rebates negotiated with pharmaceutical manufacturers on to consumers at the Point of Sale (POS). This would, ostensibly, lower the out-of-pocket costs to consumers by reducing the amount they pay at the register when purchasing a medication during the deductible phase of their insurance plan, when they pay the full cost of the co-pay/drug.

A personal example of this is my prescription for the HIV combination drug, Genvoya (Gilead). Under my current insurance plan, Highmark BlueCross/BlueShield (BC/BS), my monthly co-pay for this drug is $250 until I reach my deductible and/or out-of-pocket maximum. Luckily, West Virginia’s Ryan White program uses the Part B AIDS Drug Assistance Program (ADAP) funds to pay my co-pay, or I’d be considerably financially stressed, each month. Highmark BC/BS has negotiated a price discount for this drug and may also receive rebates that they can apply to each purchase of the drug each month (neither of which are publicly available per the trade secrets laws I mentioned, last week).

Now, imagine if I, as a consumer and client of Highmark BC/BS went to pick up my medications (or ordered them over the phone to be shipped, as is the case), and instead of the normal $250 co-pay, I received the rebate (let’s say $50) rather than Highmark BC/BS receiving it at the end of the month. My co-pay would be reduced to $200 (which is still a stretch if you’re on a tight budget), and Highmark BC/BS doesn’t. Any consumer who cares more about their pocketbooks than insurance companies’ profits would jump at the chance to pay less.

And that’s where Highmark BC/BS, represented by America’s Health Insurance Plans (AHIP) disagree. Despite any discounts they may negotiate with Gilead over the cost of Genvoya, they have also grown to expect access to significant drug rebates on top of not having to pay the list prices. So, let’s say they pay for 100 fills of Genvoya (which comes in a standardized bottle, so the number of pills is irrelevant) at a 50%-60% discount off the list price (let’s use $250/bottle as that cost). On top of that, they also have negotiated to get a $50 rebate per bottle sold. They would spend $25,000/month on those 100 bottles and expect to receive $50/bottle rebate for an extra $5,000/month back into their pockets. Essentially, they’re paying $20,000/month, and pocketing $5,000/month.

It isn’t just insurance companies and PBMs who are doing this – it’s also certain pharmacies and AIDS Service Organizations (ASOs) who operate their own pharmacies.As an ADAP program, they negotiated significantly lower prices than even the health insurance programs and get rebates back on top of it. It is no wonder, then, that these organizations are staunchly against passing on these rebates to consumers: they do their financial planning based upon the belief that they’re going to receive these rebate dollars. They argue that consumers will actually pay more if they don’t get the rebates. They argue that, because they know that they will pass along those costs to consumers, if they don’t get their way.

Pharmaceutical companies, ironically, are arguing that consumers should receive the rebates, rather than their opponents. This may have to do with the fact that there have been several Congressional hearings and inquiries into the considerably overinflated prices of their drugs. Therefore, it behooves them to appear to support anything that would ostensibly save consumers out-of-pocket costs. Moving these rebates to the POS would, essentially, cut out the middlemen in the process – the payors – and would allow those rebates to passed directly to the register when you buy your drugs. 

Photo Source: Actionable Books 

So – do consumers “deserve” this? Yes. But, that’s not all they deserve; it’s not the single solution to the astronomical costs of drugs. It has to be part of a bigger plan to reduce costs. There need to be multiple rebates at play – the ones for the payors and ones for consumers that they can receive directly to further lower the price. So, on top of the negotiated $50 back foe Genvoya on the payor side, I’d like to stack on top of that another $10-$30 consumer rebate I can download off their website or receive in an app that can be activated at the POS to take my $250 co-pay down to potentially $180. That would be much more manageable, particularly for people on fixed incomes. It’s still not great, and an overall overhaul of how drug prices are determined is still needed. But, it’s something.

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. 

Annual National Monitoring Report on HIV/HCV Co-Infection

By: Marcus J. Hopkins, Project Director, HIV/HCV Co-Infection Watch, Community Access National Network (CANN)

The ADAP Advocacy Association is sponsoring an important community roundtable on September 22nd in Washington, DC, hosted by the Community Access National Network (CANN). The pressing issue at hand: HIV/HCV Co-Infection. The First Annual National Monitoring Report on HIV/HCV Co-Infection will present findings on the state of human immunodeficiency virus (HIV) and hepatitis C (HCV) co-infection in the United States, including a summary of the HIV/HCV Co-Infection Watch, as well as the HealthHIV/HealthHCV recently published report, State of HCV Care National Survey.

The event will be held at the Pharmaceutical Research and Manufacturers of America (PhRMA) Headquarters, located at 950 F St., NW Suite 300, Washington, DC 20004. It will be held from 3:00 PM – 5:00 PM (EST). Gilead, Merck and Walgreens are also sponsoring this event, along with PhRMA.

While both HIV and HCV are significant health issues on their own, co-infection poses a serious threat to persons living with HIV. Treating HCV in conjunction with HIV can be difficult, as many of the most popular HIV combination therapies (such as Stribild) may have serious drug interactions with some of the components of newer Direct Acting Agents (DAAs) currently available to cure HCV.

Recent spikes in HCV infections related to Injection Drug Use (IDU) have led physicians in affected areas to screen also for HIV. Perhaps the most well-publicized case involved an outbreak in Scott County, Indiana, was caught due to a sharp increase in HCV infections amongst IDUs. The outbreak also led the state’s conservative legislature to approve emergency Harm Reduction measures – namely Syringe Exchanges – in counties designated as having public health emergencies. The sixth such emergency Syringe Exchange will be opening in Clark County, this fall. Clark County, which neighbors Scott County, has seen a 63% increase in fatal drug overdoses since 2013, with 49 confirmed fatal overdoses, and another 20 pending since the beginning of the year (Maher, 2016).

The HIV/HCVCo-Infection Watch released its inaugural Report in January 2015, originally focusing only on HCV drug coverage in AIDS Drug Assistance Programs (ADAPs) and Medicaid programs. Now, nearing the end of its second year in publication, the Watch has expanded to include coverage information for the Veteran’s Affairs (VA), Harm Reduction measures (including Syringe Exchanges) to prevent the spread of infection, and regional trends, which focus on issues of drug coverage, co-infection, and legislative efforts to combat the spread of HCV. Each Report also contains the latest news in HCV science, opioid/heroin addiction, pharmaceutical updates, and HIV/HCV-related news.

 HealthHIV’s report on the State of Hepatitis C Care National Survey was released in February 2016, and presents the findings gathered during the survey process. The inaugural survey, conducted in 2015 in conjunction with Medscape, LLC., collected data on both providers and the patient populations they serve, and made policy recommendations and observations related to increasing access to HCV care both outside and within the HIV care continuum.

 While the National Monitoring Report on HIV/HCV Co-Infection event is free to attend, seating is limited. Advanced registration is required, which can be done at the following web address: https://www.123signup.com/event?id=njrck.

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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.

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.

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.