Thursday, March 15, 2018

Shkreli's Cell Block Tango

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

In the acclaimed Broadway musical, Chicago, it was the "Cell Block Tango" that yielded the memorable line, "He had it coming." It now fittingly applies to disgraced former pharmaceutical executive, Martin Shkreli. The "Pharma Bro" (as Shkreli was notoriously dubbed) fraudster will be sitting in a cellblock for the next seven years, and most certainly he had it coming!

Martin Shkreli being arrested for securities fraud.
Photo Source: Daily Squat

On Friday, March 9th, U.S. District Judge Kiyo Matsumoto handed Shkreli a seven-year prison term for securities fraud, as well as ordered him to forfeit assets and pay fines. It is unlikely anyone in the HIV/AIDS advocacy community shed any tears about this news, though Shkreli's sentence reportedly brought him to tears (boo, hoo, hoo).

The discussion over drug pricing is nothing new to the HIV/AIDS community. In fact, it is a healthy discussion and one that needs to be had. But what Shkreli pulled several years ago...purchasing the rights to a popular HIV drug and then jacking-up the price more than 5000%...was unconscionable. Whereas Shkreli's sentence to do hard time had nothing to do with his actions on the drug Daraprim (pyrimethamine), it was nonetheless celebrated by our community. In fact, there was even quite a bit of humor at his expense  evidenced by the headline, "Prison commissary increases lube price by 5000% ahead of Martin Shkreli’s arrival."

According to someone who closely followed the case, "...critically, during Judge Matsumoto’s sentencing rationale, she specifically referenced receipt of correspondence from organizations working with HIV/AIDS patients as balancing off letters written in support of Shkreli." The observation was in reference to a community-led effort by Housing Works to send a strong message to Judge Matsumoto that Shkreli should forfeit his remaining shares in Vyera Pharmaceuticals (formerly Turing Pharmaceuticals), which owns the rights to Daraprim.

The community letter argued that allowing Shkreli to maintain ownership of his shares "will have a devastating impact on innocent people — including current Vyera employees, current Vyera shareholders and countless waiting for Vyera's anticipated treatments for certain orphan and rare diseases." Read the letter signed by 22 organizations, including the ADAP Advocacy Association.

Shkreli will undoubtedly appeal, but the HIV/AIDS community sent a message that such behavior moving forward will not go unnoticed, nor will it be tolerated! With respect to the Shkreli, additional advocacy on the issue is underway.

For now, Pharma Bro can be left to do the Cell Block Tango.

Cell Block Tango scene from the movie, Chicago.
Photo Source: Chicago

Thursday, March 8, 2018

Rx Drug Coupon Concerns Pit Prices Against Patients

By: Marcus J. Hopkins, Blogger

Drug manufacturer coupons have increasingly become a popular method of reducing the price consumers pay for their medications. Insurers, Pharmacy Benefits Managers (PBMs), and other payors, however, argue that these cost saving tools actually drive prices upward and result in patients choosing expensive brand name drugs over less expensive generic alternatives, essentially costing the payors more money, in the long run. As a result, some payors are taking the extraordinary step of no longer counting drug coupons toward patients’ out-of-pocket costs and deductibles, meaning that once patients use a coupon, they’ll be left to pay the remaining cost of the drug out-of-pocket.

When looking at how and when these coupons are used, however, Health Affairs = a leading journal in health policy thought and research – found that just 21% of coupons used in the 200 highest expenditure drugs of 2014 had a direct generic substitute, while another 28% had an “imperfect substitute.” The remaining 51% of drug had either no generic substitute or only branded alternatives (Van Nuys et al., 2018).

Januvia Rx Drug Coupon

For patients living with HIV (and, more recently, Hepatitis C), the past decade has been revolutionary in terms of the medications that have been made available to treat the disease. In 2007, most patients began treatment using a two- or three-pill regimen with various storage requirements. A year earlier, the first single-pill regimen, Atripla (Gilead), was approved by the FDA for the treatment of HIV.  In 2017, virtually patients begin HIV treatment with a single-pill regimen. The sad reality, however, is that there are no generic substitutes available in the United States for HIV drugs, and manufacturer coupons that reduce co-pays for them play a vital role in determining whether or not patients can afford the lifesaving medications they need.

“Consumers with life-threatening conditions are caught in the crossfire of an ongoing battle between insurers and drug companies over drug pricing. No matter who wins the battle, the casualties will be the patients, taxpayers, and the general public,” says Eddie Hamilton of the Columbus, Ohio-based ADAP Educational Initiative.

Rx pharmacy receipt
Photo Source: Consumer Reports

He is correct. In the rush to lower expenditures in the post-Affordable Care Act (ACA) market, insurers have increasingly begun weaponizing their drug formularies – the list of drugs payors will cover and for how much – against manufacturers to force lower pricing agreements, all of which are confidential under existing Trade Secrets laws. Placing brand name drugs in higher-cost tiers has been a relatively ineffective weapon when it comes to lowering overall prices, but has been an effective barrier to treatment for many patients living with HIV and other chronic illnesses for which there are few, if any, generic and/or effective alternatives.

This latest salvo against drug manufacturers will ultimately end up hurting consumers more than it will lower expenditures for insurers.

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, March 1, 2018

Is the Federal "Right to Try" Legislation Righteous, or Rotten?

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

Thirty-eight states have laws on it. The U.S. Senate passed a bipartisan bill on it (S. 204). The current occupant at 1600 Pennsylvania Avenue has endorsed it. Many patient rights groups support it. So it begs the question, what is holding-up federal "Right to Try" legislation in the U.S. Congress? Most likely it all depends on your perspective.

According to Wikipedia, "Right-to-try laws are U.S. state laws that were created to let terminally ill patients try experimental therapies (drugs, biologics, devices) that have completed Phase 1 testing but have not been approved by the Food and Drug Administration (FDA)."[1] Simply put, right-to-try laws allow patients and their doctors to bypass the FDA and seek the an investigational therapy directly from the drug manufacturer.

The libertarian-leaning Goldwater Institute touts that the right-to-try laws are already in place in 38 states and counting: Alabama, Arizona, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Idaho, Illinois, Indiana, Iowa, Kentucky, Louisiana, Maine, Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, Nevada, New Hampshire, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, West Virginia, Washington and Wyoming. More states are expected to follow suit, too.[2] This effort is supported by numerous national patient advocacy organizations.

Certainly for people living with life-threatening (or potential life-threatening) conditions, right-to-try laws make perfectly good sense to them. In fact, there was a time when living with HIV/AIDS was considered one such condition (and still can be so, if the person is not properly treated or if the person is experiencing treatment failure/resistance). “Dallas Buyers Club” styled arrangements back in the 1980s and early 90s come to mind. Today, it is common to find enthusiasts for right-to-try laws among people living with Alzheimer’s disease, cancer, chronic obstructive pulmonary disease (COPD), or Lou Gehrig’s disease (ALS), among others. People living with HIV/AIDS also appear to support them, at least in theory.

There has been a growing effort to pass a federal right-to-try law, mirrored after what states have already passed. Nathan Nascimento, senior policy adviser at Freedom Partners Chamber of Commerce, previously argued in Forbes Magazine: "The few available remedies for this problem are limited. The agency sometimes issues 'compassionate use' exemptions allowing patients to try certain medicines and treatments still under federal review, but getting those exemptions is easier said than done. Roughly 99% of those seeking compassionate use exemptions never get through their application."[3]

Though there has been increased attention on right-to-try laws, they received a big boost earlier this year. On January 30th during the State of the Union (SOTU), such laws received the unequivocal support from the man delivering the speech:
“We also believe that patients with terminal conditions should have access to experimental treatments that could potentially save their lives. People who are terminally ill should not have to go from country to country to seek a cure — I want to give them a chance right here at home. It is time for the Congress to give these wonderful Americans the ‘right to try.’”
President Trump delivers his State of the Union address
Photo Source: SUSAN WALSH/AP
The remarks were hailed by David Barnes, who serves as the policy director for the millennials advocacy group Generation Opportunity. Barnes penned an Op-Ed in which he argued, "Change to federal policy is needed to ensure that the FDA, or any other federal agency, does not interfere with state-passed laws. And there are terminally ill patients who don’t live in Right to Try states and desperately seek a chance to save their lives."[4]

Not everyone applauded the presidential endorsement.

Alison Bateman-House, assistant professor in the Division of Medical Ethics at NYU School of Medicine, claimed what was extolled in the SOTU would only punish the seriously ill. Writing an opinion piece in Forbes Magazine, Bateman-House summarized, "Rarely has a president spoken so vehemently in favor of a bill that would do so little for the sick. But even allowing for the extemporaneous nature of these remarks, it is clear that the president misunderstands how access to investigational drugs works in the U.S. and how right-to-try legislation, if enacted, would change it."[5]

Ms. Bateman-House was not alone. The Society for Science-Based Medicine (SBM),[6] and the National Organization for Rare Disorders (NORD)[7] vehemently oppose such laws. Other groups have also expressed concerns.

Interestingly enough, an important cancer survivor also has doubts about the pending federal right-to-try law. Scott Gottlieb, who serves as the current FDA Commissioner, testified before Congress, “Adequate policies and processes must be in place to appropriately balance individual patients’ needs for access to investigational therapies while recognizing the importance of maintaining a rigorous clinical trial paradigm for testing investigational products to demonstrate safety and efficacy.[8]

As stated earlier, it is all about perspective. The ADAP Advocacy Association has not taken a position on this policy issue.

Related articles of potential interest:


[1] Wikipedia, the free encyclopedia (2018, January 3). Right-to-try law. Retrieved from
[2] Goldwater Institute (2017). Right to Try. Retrieved from
[3] Nascimento, Nathan (2016, August 31). Right To Try: A Healthcare Reform That Can Save Lives. Forbes Magazine. Retrieved from
[4] Barnes, David (2018, February 15). Congressman Flores should press ‘Right to Try’ bill. Waco Tribune-Herald. Retrieved from
[5] Bateman-House, Alison, Lisa Kearns and Arthur Caplan (2018, February 1). Trump's 'Right To Try' Push Would Only Punish The Seriously Ill. Forbes Magazine. Retrieved from
[6] Ballamy, Jann (2014, March 6). The illusions of “right to try” laws. Science-Based Medicine. Retrieved from
[7] Mullen, Laura (2018, February 13). One-pager from NORD on Opposition to Right to Try Act.  National Organization for Rare Disorders. Retrieved from
[8] Gottlieb, Scott (2017, October 3). Examining Patient Access to Investigational Drugs. Before the Subcommittee on Health, Committee on Energy and Commerce, US House of Representatives. Retrieved from

Thursday, February 22, 2018

Trump & HHS Sanction Healthcare Discrimination

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

The ADAP Advocacy Association earlier this week joined with the Community Access National Network (CANN) in issuing a strong rebuttal to the expected approval of new federal rules sanctioning discrimination by healthcare workers. The “Moral Exemptions & Accommodations for Coverage of Certain Preventive Services Under the Affordable Care Act” — which was initially published in the Federal Register on October 13, 2017, and subsequently on January 26, 2018  harkens the United States back to the dark, early days of the AIDS epidemic. It is absolutely deplorable!

Photo of an unhappy nurse standing near a patient's bedside
Photo Source:
The impending federal rules are not surprising since the current occupant at 1600 Pennsylvania Avenue has systematically embraced the hateful rhetoric and policy positions of the extreme religious right in this country! In the Oval Office, our beloved Bill of Rights has been replaced with advise from Tony Perkins. In the U.S. Department of Health & Human Services, our sacred Hippocratic Oath has been shoved aside to make room for James Dobson. In the HHS Office for Civil Rights, primum non nocere (first, do no harm) has been flushed down the toilet to make way for the bullsh#t being spewed by Jerry L. Falwell, Jr.

Clearly, most of the anti-gay and anti-AIDS posturing is coming from our esteemed Vice President (pun intended). The buck stops with the (crazy) man at the top, and he is who must be held accountable for sanctioning this discrimination.

In fairness, such laws are nothing new. So-called "Church Amendment" laws date back to the 1970s. Most recently it was the Affordable Care Act (Pub. L. No. 111-148 as amended by Pub. L. No. 111-152) itself that included such conscience protections regarding abortions and assisted suicides. The newly released proposed federal rules go further, though.[1]

The target of the so-called "Conscience Rule" are women seeking abortions, but also an entire group of people who identify as gay, lesbian, bisexual, or transgender (LGBT). Its potential reach has broader implications. And as such the reaction from the medical community, scientific organizations, patient advocacy groups, mainstream religious institutions, and so many others has been overwhelmingly negative.

It was summarized best by our board member and former Registered Nurse, Wanda Brendle-Moss:
"As a practicing nurse in Winston-Salem, North Carolina during the early 1980s, I witnessed firsthand the devastating impact of a new illness that was wreaking havoc on the gay men. What made the circumstances robbing so many lives even harsher was medical professionals refusing to treat these patients because they feared the illness. That illness would soon have a name, and it remains with us today: AIDS. Though we’ve made a lot of progress in fighting this deadly epidemic — which as taken nearly 40 million souls from us globally — that fear remains today. Unfortunately, new guidance issued by our government only makes matters worse."
According to Brendle-Moss, trying to comprehend the long range impact of the changes is incomprehensible. In her estimation the "First, Do No Harm" oath taken by all medical students could now be replaced with the prejudicial refusal to provide care and treatment. As a woman living with HIV/AIDS, she fears for the future of her longtime profession if it is allowed to be held hostage to religious fanaticism. She rhetorically asks, "What will be the standard of care for persons diagnosed with AIDS, or women seeking family planning services?"

It isn't only the LGBT community that is concerned. Women are also rightfully worried, especially those who are battered women or rape victims. We've already seen how people living with HIV/AIDS were treated at the outset of the AIDS epidemic. All of these groups...and others...could be faced with legalized refusal to treat under these new federal regulations.

Read the Joint Statement on Discriminatory Proposed Healthcare "Conscience Rule".

Photo of a broken pill


[1] Mohr, Aaron, and Allison Smith (2018, February 9); How HHS’s New Division in the Office for Civil Rights Will Enforce Rights of Conscience and Religious Freedom; JD SUPRA. Retrieved from

Thursday, February 15, 2018

Advocacy Scholarship Applications Now Being Accepted for 11th Annual ADAP Conference

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

This week via Twitter (@adapadvocacy) the ADAP Advocacy Association announced it is accepting advocacy scholarship applications to attend its 11th Annual AIDS Drug Assistance Program ("ADAP") Conference. The 2018 conference is being held on September 20th & 21st under the theme, "Mapping a New Course to Protect the Public Health Safety Net."

The Annual ADAP Conference is the premier, patient-centric advocacy event on the AIDS Drug Assistance Program held in Washington, DC. It assembles advocates, community organizers, health care professionals, government agencies, patients, pharmaceutical companies, pharmacies, and other stakeholders for two days of advocacy, dialogue, education, and networking.

In 2017, over 50 scholarships were funded for advocates to attend the advocacy and educational events with recipients representing 20 states (including AL, CA, FL, GA, IL, IN, LA, MA, MD, MI, MO, NC, NY, OH, PA, SC, TX, VA, WA, and the District of Columbia). This year, we hope to fund even more.

Advocates interested in submitting an application for a scholarship to attend the conference can do so online at Four different scholarships are offered, and they include:
It includes waived conference registration fee and awards dinner registration, only.
It includes waived conference registration fee and awards dinner registration; and provides two nights hotel accommodation.
It includes waived conference registration fee and awards dinner registration; and provides roundtrip transportation (up to $325.00).
  • SCHOLARSHIP OPTION D (Editor's Note: Applicants for this option must be invited to apply using an invitation code)
It includes waived conference registration fee and awards dinner registration; provides two nights hotel accommodations; and provides roundtrip transportation (up to $325.00).

Applicants seeking a full scholarship (option D) to attend the 11th Annual ADAP Conference must be invited to apply using an invitational code. This represents a new policy for the full scholarship option.

11th Annual ADAP Conference
The scholarship application process has grown increasingly competitive since it was launched six years ago. As such, we look to offer scholarships to advocates who are looking to do more than simply learn; rather we're seeking to assist advocates who will take what they learn and apply it back home in their communities. Scholarship recipients are required to sign a scholarship contract since more scholarship applications are received than can be approved each year, and therefore it is expected that scholarship recipients attend the conference sessions.

Please help to support these advocates by donating online today.

Additional information about the 11th Annual ADAP Conference is available online. Potential scholarship applicants can also obtain additional information about the conference and scholarship process by sending an email to

Thursday, February 8, 2018

Taking a Deeper Dive into the Ryan White HIV/AIDS Program

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

The Health Resources & Services Administration ("HRSA") HIV/AIDS Bureau at the U.S. Department of Health & Human Services ("HHS") has made available state profiles to highlight important client-level data (2015). It includes an interactive web platform, which allows users to compare states, compare states to national data, or compare data by year. The estimated number of clients served by Ryan White HIV/AIDS program providers in the United States in 2015 was 533,0361.[1]

Aside from client characteristics, other key data focuses on grant recipients, client outcomes, oral health programs, and services received. Of particular interest to stakeholders concerned about the AIDS Drug Assistance Program ("ADAP"), users can download how ADAP funds were administered in the United States in 2015. In 2015, an estimated 259,531 clients were served by ADAP in the United States. According to HRSA, new clients were served totaled 34,265.[2]

Map of the United States showing Ryan White HIV/AIDS program clients served, by state, 2015.

The site shares key ADAP-related client demographics on age, gender, race, and income. For example, Florida served 56,677 clients in 2015. Males represented 75.9% of the clients served, and females represented 23.4% of the clients served. Clients who identified as transgender were 0.7%. Vermont served 595 clients, with one in four clients being male.

HRSA sharing the Ryan White program-related data is not only important because it promotes programmatic transparency (and these programs have long demonstrated to be highly effective), but also because it fosters better state-level advocacy. All too often, data on public health programs can often be quite lacking, or delayed (or both). The data included on the site will come in handy as we map a new course to protect the public health safety net!

Explore national-and state-level Ryan White HIV/AIDS Program data.


[1] HRSA. Ryan White HIV/AIDS Program Services Report (RSR) 2015. *RSR data were deduplicated at the national level. Clients receiving services in multiple states were not included in state-specific totals; these clients make up less than 2% of the total RWHAP population.
[2] HRSA. Ryan White HIV/AIDS Program Services Report (RSR) 2015. 

Friday, February 2, 2018

Introduce a Little Anarchy...and Everything Becomes Chaos

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

In the 2008 blockbuster film, The Dark Knight, there is an infamous line by the Joker (played by the late Heath Ledger): "Introduce a little anarchy; upset the established order, and everything becomes chaos." That line by the Clown Prince of Crime pretty much sums up the last twelve months for those of us working to end the HIV/AIDS epidemic. In fact, chaotic would be an understatement.

The Joker in the movie, The Dark Knight
Photo Source: The Dark Knight

The Administration's proposed budget last year was submitted to Congress late (and it will be so again this year), and it was laced with requested funding cuts to vital safety net programs. The Presidential Advisory Committee on HIV/AIDS ("PACHA") is in complete disarray between protest resignations coupled with termination of the remaining members. The Office of National AIDS Policy ("ONAP") — viewed as an important component of the White House Domestic Policy Council since 1993 is seemingly gone. There has been no ONAP Director to coordinate the nation's response to HIV/AIDS at home, and abroad. Proposed regulations allowing healthcare professionals to deny care if it violates their "conscious" and seek to divert limited resources to organizations that refuse comprehensive strategies under the banner of religious objection. And that doesn't even scratch the surface with the countless attacks levied against the patient protections offered to people living with HIV/AIDS under the Affordable Care Act ("ACA").

On February 1st, we fired a shot across the bow at the Administration. We called on the newly minted Secretary of the U.S. Department of Health & Human Services ("HHS") to fill the vacant director position at ONAP. Now to be fair, HHS Secretary Alex Azar has no statutory authority to fill this position but he has the ear of the President who does — and that has to be worth something. Our press release is available online.

Health and Human Services Secretary Alex Azar, left, accompanied by his family, is sworn in during a ceremony in the Roosevelt Room at the White House, Monday, Jan. 29, 2018, in Washington. (AP Photo/Andrew Harnik)
Photo Source: (AP Photo/Andrew Harnik)

It is, after all, a core responsibility of the HHS Secretary to utilize the position of influence with the President in seeking to address the public health needs of the nation. We have added our voice to the calls from numerous other advocates, legislators, and organizations that realize the vital need for this position to be filled immediately.

Since 1993 when ONAP was created the longest time period the director position remained vacant was approximately two months. It has now been twelve months since someone has led our government's response to an epidemic that has taken 35 million souls globally. It is bad public policy. It demonstrates poor leadership. And it is simply wrong!

Friday, January 26, 2018

Do Consumers Deserve Rx Savings? (Part 2)

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?

Rx Script with the words, "2% cash rebate"
Photo Source:

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. 

Tom Cruise yelling, "Show me the money," from the movie, Jerry McQuire
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. 

Thursday, January 18, 2018

Do Consumers Deserve Rx Savings?

By: Marcus J. Hopkins, Blogger

In 2017, President Trump became infamous for proclaiming, “Nobody knew healthcare could be so complicated.” In reality, every legislator and policy wonk in America knew healthcare was complicated; but, for everyday Americans, healthcare is often no more complicated than going to a physician and being treated. When you get into the weeds of how the whole system (in America…) works, it becomes needlessly complex with so many working parts, it’s no wonder a stable genius can make neither heads, nor tales of it.

Photo of President Donald J. Trump
Photo Source:

This is the case with drug pricing. For people living with HIV/AIDS (PLWHAs) and other chronic illnesses that require “specialty” pharmaceutical products (read: drugs), what happens between our prescriptions being written and the price we pay for purchase is often so nebulous that trying to decipher the process as a layman is nigh impossible.

High drug prices have long been fodder for impassioned debates between manufacturers who insist that they only price drugs at “what the market will bear,” patient advocates who insist that out-of-pocket costs are too high, and government officials who wring their hands about drug prices, but do little to actually control or lower them. Are these higher brand name drug prices justified? Is it ethical for companies to exponentially increase the price of medicines? What is the purpose of having a Wholesale Acquisition Cost (WAC – which is the list price set by manufacturers) if no one is going to pay it after rebates, discounts, coupons, and pricing agreements? None of these questions ever REALLY get answered, because doing so would send shockwaves through the pharmaceutical industry – and frankly, that’s not such a bad idea.

All these price negotiations and rebates are done behind the scenes, all of which are protected by existing trade secrets laws that prevent the final cost of drugs from being publicly listed, meaning that consumers rarely ever know or realize that the end price they pay when they pick up their prescriptions reflects a price that could be lower if insurance plans changed where those rebates are discounted. Furthermore, as healthcare costs continue to increase by large margins while real wages have stagnated, U.S. consumers end up paying considerably more for medications than any other nation in the industrialized world.

As the cost of health insurance continues to increase, the number of consumers saddled with High-Deductible Health Plans (HDHPs) continues to burgeon, meaning that, during the deductible phase of the policy, patients who have not yet met their deductible are accountable for the full cost of their medications. In most existing payor landscape, if the payor (the insurance company/plan) has negotiated a rebate with the manufacturer, the patient assumes the full burden of the drug cost up front and the payor later receives the rebate on the back end. Payors argue that this practice allows them to “keep member benefit costs – deductibles, co-pays, and premiums – lower.” What ends up happening, however, is that consumers end up paying more, while payors are able to pocket more of the money and lower their share of cost.

Another model, however, exists, where manufacturer rebates are applied at the Point of Sale (POS), lowering the cost to consumers. This requires the payor to assume a greater share of the costs, but those can be offset by minute increases in premiums, allowing the consumer to pay less overall.

If all of this seems mind-numbingly wonky, that’s because it is. The whole landscape of pricing, payors, 340B, ADAP, Medicaid, Medicare, and consumers is such a snarled web of negotiations, rebates, discounts, coupons, and double-dipping, it’s virtually impossible to walk away with an operational understanding of the system in a single blog post. It would likely take an entire year of blog posts just to demystify every aspect of what goes into this mess, and even then, a lot is still protected by trade secrets laws.

If the Centers for Medicare and Medicaid Services (CMS) under this Administration is so determined to save consumers money on drug prices, what really needs to be done is for manufacturers to just lower drug prices. But, that doesn’t serve their primary goal of making more money. The pharmaceutical industry has established a web of systems wherein each individual entity (e.g. – pharmacies, insurers, Medicaid, ADAP) has to individually negotiate with them for a private gross price (“gross,” in this instance not meaning disgusting…but, only just) for the purchase of their products. On top of that, the manufacturers offer them rebates for each purchase, which drives the cost to the payor even lower (and they keep the difference between the gross and rebated prices).

Rx pill bottle with money and pills inside
Photo Source: Piper Report

Because those negotiated prices can’t be revealed publicly, it allows the manufacturers the ability to charge different entities higher or lower prices, thereby increasing or decreasing their profit margins. This kind of pricing structure is virtually unheard of in other parts of the world, because those governments were smart enough to adopt a universal healthcare model, rather than this patchwork quilt system we have in America. Instead, we get stuck with this Frankenstein’s Monster that allows these companies to amass record profits, all while pretending that the cost of research and development justifies the outlandish prices they charge for their products (much of which has already been paid for using taxpayer dollars, meaning they’re essentially selling these products BACK to us).

While it’s great that the pharmaceutical industry claims it wants to help consumers by moving rebate discounts to the front end, their efforts do nothing to mitigate the rising cost of healthcare.

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, January 11, 2018

NASTAD Releases Updated 2017 ADAP Formulary Database

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

Allowing people living with HIV/AIDS ("PLWHAs") to make informed decisions about their own healthcare has been a cornerstone of the ADAP Advocacy Association's mission since the organization launched in 2007. All too often, local service providers and advocacy organizations take a paternal approach to PLWHAs, evidenced by the complaints expressed directly by the people themselves. One organization should be commended for their efforts to put important treatment-related information directly at the fingertips of PLWHAs, specifically as it relates to drug formularies under the AIDS Drug Assistance Program ("ADAP").

Two pill capsules, one with the word "rejected" and one with the word "accepted" on them
Photo Source:

The National Alliance of State & Territorial AIDS Directors ("NASTAD") announced late last year that it had updated its Online AIDS Drug Assistance Program (ADAP) Formulary Database (2017 version). According to NASTAD, its database provides "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]

The database offers the following:[2]

  • General Information
  • Antiretroviral medications
  • ARV Generic Equivalents
  • “A 1” opportunistic infection medications
  • Hepatitis B treatments
  • Hepatitis C treatments
  • Substance use treatment medications
  • Mental health treatment medications
  • Other medication categories
  • Vaccines
  • HIV & STD diagnostics
  • Hepatitis C diagnostics

NASTAD's 2017 Online AIDS Drug Assistance Program Formulary Database is available online at

Making such a valuable resource available directly to PLWHAs (and others) cannot be under-estimated in its importance. Access to timely, appropriate care and treatment is essential to achieving improved medication adherence, greater peace-of-mind, and better health for people living with any chronic health condition. Yet we know one of the most stressful things for PLWHAs are their medications. More efforts like NASTAD's database should be implemented across the treatment cascade.

In fact, that is the very reason why we launched our ADAP Directory. It offers PLWHAs (and others) a one-stop online resource center for the latest ADAP information for better decision-making for HIV/AIDS care; improved quality of HIV/AIDS information; and assistance for advocates and medical staff. It also includes an ADAP Eligibility Calculator. The ADAP Directory is available online at

Yes, that was a shameless plug for our flagship program. Now back to NASTAD's efforts...

NASTAD's database is very comprehensive. Some key findings from the updated 2017 ADAP Formulary Database include:[3]
  • 12 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
  • 39 ADAPs cover one or more hepatitis B treatment medication
  • 40 ADAPs cover one or more hepatitis C ("HCV") treatment medication
  • 34 ADAPs cover one or more of the curative direct acting antiviral ("DAA") HCV treatment medications
  • 46 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
  • 27 ADAPs cover one or more substance use treatment medication
Any questions about NASTAD's database should be directed to Amanda Boyles at Kudos, NASTAD! Kudos!



[1] Penner, Murray (2017, November 29); NASTAD Releases Updated 2017 ADAP Formulary Database; National Alliance of State & Territorial AIDS Directors (NASTAD). 
[2] National Alliance of State & Territorial AIDS Directors (2017, November 29); 2017 ADAP Formulary Database; National Alliance of State & Territorial AIDS Directors (NASTAD); page 4. 
[3] Penner, Murray (2017, November 29); NASTAD Releases Updated 2017 ADAP Formulary Database; National Alliance of State & Territorial AIDS Directors (NASTAD). 

Thursday, January 4, 2018

Gary was One for the Roses

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

In late 2006, Bill Arnold approached me about starting a national organization whose mission would be solely dedicated to promoting and enhancing the AIDS Drug Assistance Program (ADAP). Long before anyone else, Bill predicted the "Perfect Storm" that would befall the increasingly cash-strapped program. The idea behind the ADAP Advocacy Association was putting into place a platform to educate and mobilize people living with HIV/AIDS (and others) long before this storm rolled in. Next, Bill said, "If we're going to do it, then we're going to need Gary Rose on board."

Bill was right!

Gary Rose, after all, had years of specialized experience working to improve access to care and treatment for people living with HIV/AIDS, as well as viral hepatitis and leukemia. As a consultant, Gary worked closely with Millennium Pharmaceuticals, Roche, GlaxoSmithKline, Bristol-Myers Squibb and others to advance key advocacy programs and policies in oncology, rare disorders and other conditions with serious impacts on patients and their carers. He also worked with the U.S. Department of Health and Human Services Office of National AIDS Policy. In the late nineties through 2004, Gary served as Senior Vice President with Hyde Park Communications. His work included health systems consulting for clients including Hoffmann-La Roche, Bristol-Myers Squibb, Pfizer, and the TAEP Project. In the 1990s, he served as the Research and Treatment Coordinator for the AIDS Action Council in Washington, DC. While at AIDS Action, Gary helped to form the ADAP Working Group and the Patients' Coalition for Responsible FDA Reform. He also served as a co-chair of the National Associations Responding to AIDS (NORA).

Gary R. Rose, JD
Gary R. Rose, JD
After I had learned about Gary's accomplishments and experience with so many big organizations, I was skeptical at the time that Gary would be interested. But he was thrilled with the idea of starting the ADAP Advocacy Association! I remember his exact words when Bill approached him about it. Gary said, "I'm in."

Throughout the early part of 2007, Gary served on the Organizing Committee charged with laying the foundation for the organization (along with Bill Arnold, John D. Kemp, Esq., Joyce Turner Keller, Keita Simmons, Philip A. Haddad, MD, and Rani G. Whitfield, MD). This Organizing Committee eventually was seated as the first Board of Directors after the organization was legally established on July 6, 2007.

Gary immediately left his imprint on me when he proposed a set of value statements. In his words, "They would be the foundational ideals under which the ADAP Advocacy Association operates." To this day the value statements are listed on our website, and they include:

  • That the organization consistently strives to achieve them, while encouraging its supporters to do the same.
  • That the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion.
  • That HIV/AIDS advocates should welcome the opportunity to join the skills, experience and voices with others on issues of disability and access to adequate healthcare for all Americans.
  • That advocacy efforts targeted to our federal government shall always carry the needed messages applicable at the state and local level.
  • That messages and information shall be in accessible formats understandable to - and also deliverable by - grassroots advocates in any setting.

Gary only served on our Board of Directors for one year, but he left his lasting mark on the organization in so many ways. Gary understood the importance of people living with HIV/AIDS being front and center on all advocacy efforts. In fact, he felt it was one area where some existing national organizations had lost their way. He constantly reminded us that an HIV organization cannot represent people living with the disease if they're not seated at the table, making the tough decisions. He also embraced the need to engage the broader disability advocacy movement because the two had gone their separate ways after the Americans with Disabilities Act was signed into law. Finally, Gary often lamented on the division within the HIV community itself, and stressed the need for the new organization to strive to bring all stakeholders together. That is why the following statement is also embedded in our work: The ADAP Advocacy Association works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders.

On December 30th, Gary left us to go meet his Maker. I'm sure upon entering the pearly gates, Gary was looking how to make Heaven a better place because that is how he lived his life here on Earth. Gary was our friend, our colleague, our mentor, our leader and often times, our conscience. Gary was one for the roses, and that much is certain. Gary, you will be missed...

Gary R. Rose speaking at SAVE ADAP event
Gary R. Rose speaking at SAVE ADAP event in Wash-DC