2011 was a year of numerous milestones for our foundation, and also was the beginning of a profound change in how the government will reimburse health providers who care for the less fortunate. Phil died on May 6, 1991 20 years ago. Two decades is a long time, but to our family and the numerous people that Phil touched, it seems like only yesterday that he was "getting the word out" about finding a cure for HIV/AIDS and fighting for the civil rights of the gay and lesbian population.
Another two-decade milestone that was hit in 2011 was the 20 year anniversary of AIDS Service Center (ASC NYC). ASC sponsored a fall fundraising event, which honored 20 "change makers" who they believe had made an "impact" over that period. Our foundation was chosen as one of the 20; we were surprised and humbled by the honor. As a Board Member of ASC, I helped raise money for the event and thank all my friends for helping to make it a success.
2011 marked the 25 year anniversary of the passage of the "Gay Rights Bill," a civil liberty/rights landmark. Phil and Jane Lippman filmed and documented this event, which garnered international acclaim and an Emmy nomination. We are pleased that our country has finally begun to recognize and accept this civil rights struggle.
Filming and interviewing was one of Phil's passions. During 2011 we decided it would be an appropriate time to interview seven people, who eloquently spoke about the past, present and future of the HIV epidemic and human rights in general. Each shares our dedication and passion. We hired Andy Humm to moderate the interviews (I interviewed him as # 7). For over 30 years, Andy has been a tireless LGBT and civil rights advocate. He is an excellent interviewer, writer, and still moderates/co-hosts a cable TV show. I worked with the same Jane Lippman to edit the interviews. Deborah Chow, our Web magician, made the interviews come alive on our Website. Please visit our site www.pzfoundation.org and watch each one (they are only about eight minutes each), as they capture different prospectives of the 30 plus year struggle and what the future may hold.
In the "getting the word out" category, two thought provoking documentaries were finalized in 2011 and opened in early 2012. "How to Survive the Plague" was created by David France, a gifted writer who won wide acclaim with this hard hitting documentary about how members of ACT-UP pushed the US government/FDA to more quickly allow experimental drugs to be widely distributed. The other film, "United in Anger," was created by Jim Hubbard. We have supported Jim on numerous occasions over the years. Coincidentally, he was once a roommate of David France. Jim has spent the last 5-10 years interviewing AIDS activists, and this film captured many of those heroes. Of note, both film makers asked us to "borrow" a few minutes of Phil's film library. In David's film, Phil appeared in a small segment doing what he did best interviewing.
One of the seven interviews we did was of a 20 year old man who works at ASC as a peer educator. He represents the future and is why I co-titled this letter the "fork in the road." While much has been done to calm down the fear of HIV-AIDS, he speaks clearly about how young people, particularly in underprivileged settings, are not receiving adequate education about HIV AIDS and related illnesses. Specifically he highlights the ramifications of disease management in general and how HIV/AIDS is just one of the unfortunate diseases affecting the underprivileged. Numerous diseases such as Hepatitis C, diabetes, and kidney failure are growing on a nationwide and worldwide basis, and especially rapidly in the underprivileged world.
The "fork" we have to contend with is that the Federal and State governments have begun to massively change how they intend to deliver and pay for care. We all know that too much money has been wasted through bureaucratic programs. One of the largest health care changes will affect Medicaid, the program that has historically aided the poor and disenfranchised. The program is being totally revamped. The good news is that more people should be cared for; the bad news is that during the next few years the transition period will bring about enormous turmoil for many small community-based organizations that have diligently brought such patients to doctors, hospitals and facilities. Long term, such new programs will help, but in the short run the government has dramatically slowed payments (partly due to fiscal constraints) and has not provided clear guidelines on how to proceed.
In my opinion, numerous community- based organizations will perish in the next few years due to cash flow shortfalls. Others must immediately adapt to the new world order, which the government is calling "Total Disease Management." It is no longer enough to help HIV victims who incidentally are living longer. This issue was documented by two of our interviewees, Dr. Jeffrey Greene and Tom Smith, both of who explain that many HIV/AIDS patients will die of "normal human/old age conditions." One of the new government programs is called "Health Homes," which creates "gate keepers" such as large hospitals and HMO's that will provide "one stop shop" care. The problem is that many of the Medicaid patients need to find where to go. They have typically used the expensive Emergency Room (ER) for management of care. I have reached out to numerous AIDS Service related organizations in New York to work together to use technology to account for and manage this high risk population. Also, we need young volunteers like pre-med students, to help bring about the change. If you know any who are looking for summer work, let me know.
The future model focuses on giving hospital and payers control of the underprivileged population. The power to manage this population by these organizations has failed miserably in the past, and brought about the "community-based care coordinators" that are struggling. More to follow on this subject, but the fork in the road has been reached; In fact a pitch fork has been taken to the old way of doing business. If hospitals and payers do not work together more efficiently with these community organizations, the system will break down further.
While our foundation's mission remains the same, our focus will continue to evolve on not only working with organizations that are helping HIV patients, but ones that extend their reach to other chronic conditions that affect the poor. Fortunately, two of our long term grantees, University Settlement and Village Care, have expanded programs to reach broader populations. AIDS Service Center which recently changed its logo to ASCNYC, is carefully looking to expand its menu of services.
Please help us support our hard working grantees (who appear on our Website grant page) through pro-bono professional time, volunteering or making a donation.
Until Next Year,
Phil Zwickler Charitable & Memorial Foundation Trust