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

1 comment:

Anonymous said...

Sadly, I was not lucky enough to know the great Gary Rose in his prime. I will say that I was lucky enough to be graced by his presence in his later days, and I can only say that all my memories will be of a strong willed man who had so much to show the world. He will be remembered as a true genius and a true heart by those who love him. The memory of a strong spirit will resonate within those who adored you. Rest peacefully. You will be missed.