Showing posts with label Housing Works. Show all posts
Showing posts with label Housing Works. Show all posts

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



Friday, April 22, 2011

When will Washington come to the Rescue?


When President Barack Obama signed into law the Fiscal-Year 2011 appropriations law (H.R.1473), many programs didn't share the modest success achieved with the small funding increase for the AIDS Drug Assistance Programs ("ADAPs"). The law provides $885 million for ADAP. This is $25 million more than was obligated in FY10, after a $25 million transfer added supplemental funds to address waiting lists. The bill provides $8 million more than H.R.1 - which was the House-passed version. Whereas the ADAP Advocacy Association (aaa+) applauded the President and Congress for the small increase - especially since many other safety-net programs were cut or level-funded - it begs the question: How satisfied should ADAP stakeholders be with the result?

Yes, clearly we're grateful for the additional $48 million because it will alleviate the ongoing ADAP crisis, albeit temporarily. It was a grassroots victory more than a demonstration of leadership by the national HIV/AIDS organizations (including this one). But more needs to be done! More voices need to be heard! More people living with HIV/AIDS - especially those patients being directly impacted by the ADAP waiting lists - need to get involved!

At the time this blog is published, there are 7,885 people living with HIV/AIDS on ADAP waiting lists in 11 states. Among them, Arkansas with 56 people; Florida with 3,807 people; Georgia with 1,343 people; Idaho with 10 people; Louisiana with 894 people; Montana with 24 people; North Carolina with 178 people; Ohio with 341 people; South Carolina with 612 people; Virginia with 616 people; and Wyoming with 4 people. And that doesn't even include the "invisible waiting lists that stretch into the thousands of patients adversely impacted by other cost containment strategies.

Failure is NOT an option because lives hang in the balance.

In response, aaa+ – together with its Lead Sponsor AIDS Healthcare Foundation (“AHF”) and in coordination with the Community Access National Network (CANN) and Housing Works – is hosting its 2011 Annual Conference as an AIDS Drug Assistance Program Summit. This year’s conference theme is “ADAPs in Crisis: When will Washington come to the rescue,” which aims to assemble ADAP stakeholders from all of the various constituency groups – including patients, advocates, service providers, health care providers, pharmaceutical companies, allied health professionals, specialty pharmacies and others.

ADAPs are in crisis. The purpose is to identify key action steps to secure additional federal appropriations, programmatic reforms, and available public and private resources to alleviate the ongoing cost-containment strategies that are putting thousands of people living with HIV/AIDS on ADAP wait lists or program disenrollment.

Faced with the “Perfect Storm” that is being fueled by high unemployment, record number of uninsured, state budgetary cutbacks, high cost of medications and inadequate federal funding, there are a historic number of people being denied access to treatment. Without intervention from either the executive or legislative branch, several thousand people living with HIV/AIDS will be at risk of developing Opportunistic Infections (“OIs”), and thousands of others who are HIV-negative will be at greater risk of contracting the virus because their HIV-positive counterparts are more infectious when not taking Highly Active Anti-Retroviral Therapy (“HAART”). The conference provides an excellent opportunity to demonstrate the proven Return on Investment (“ROI”) of ADAPs.

To learn more, please visit http://www.adapadvocacyassociation.org/events.html.