We are happy to announce that we raised over $40,000 at our 2015 Brookside event! The generous donations of our loyal contributors will allow us to continue our drug research and treatment access advocacy, and to provide valuable financial, educational and emotional support to people with HIV infection.
The generous financial donations and the time and effort of our loyal volunteers, has made a real difference to us at this precarious time. Just like all Americans, AAB has been adversely affected by the prolonged recession. As things get tougher and tougher for us, I can’t tell you how much it means to us to receive such generous support. We work so hard. It means the world to us to know that people know that we are in the trenches and doing our best at this critical time.
On behalf of the AAB Board and volunteers, thank you all of you who attended our event as well as those of you who helped to make it a success again this year. We hope you all had a wonderful time. Please know that your assistance makes a real difference in the fight against AIDS and ability to keep our doors open. Without people like you, there would be no AIDS Action Baltimore.
— Lynda Dee, Angie Cordish and the Brookside Committee, Harry Alascio, Mike Aquino, Jake Boone, Kenny Eggerl, Mark McMullen, Ricki Rutley, Jimmy DeSantis, Justin Myers
AIDS Action Baltimore (AAB) has been providing essential services to people with HIV/AIDS since 1987. Thanks to your generosity, we’re still standing after a long hard financial battle. We know only too well that times are still tough, but as we commemorate our 28th year of service, we hope we can count on your continued support which will help us maintain our many HIV/AIDS programs. We still desperately need your help to keep our doors open and continue to provide our many essential services to the Baltimore HIV/AIDS community. We hope you will remember us and continue your loyal support. Please help us in any way you can. Your donations will enable us to continue our marvelous record of benevolence and compassion with only a rate of 4.9% overhead in 2014. The amount of work we accomplish and the effect we have had on the war against HIV and HCV with only two full-time and two part-time employees is truly amazing!
Although HIV disease is becoming a chronic manageable disease, here is w hy we still need your help now more than ever:
In the latest Centers for Disease Control data reported in March of 2013, Maryland ranked third highest in the rate of new HIV infections in US states and territories and fourth highest in the number of people living with HIV. The Maryland Department of Health and Mental Hygiene estimates that there are currently 6,250 Marylanders who are unaware that they are HIV positive.
AAB was instrumental again this year in the effort to streamline HIV testing laws, working with Delegate Clarence K. Lam to pass his bill to amend current Maryland law so that more people will be able to be tested for HIV. Because of Delegate Lam’s leadership and AAB’s assistance in this arena, it will now be much easier for people who want to be tested to do so without a lot of red tape. This will
help thwart the needless spreading of HIV. Once people know they are HIV positive, they are much less likely to practice risky behavior. People also need to know they are HIV positive so that they can take advantage of all the new treatments we are helping to make available. The most recent HIV clinical trials data tells us that the sooner you treat HIV, the better your chances of continued good health and survival.
AAB continues to provide financial assistance to many needy people with HIV/AIDS. AAB has provided this support to over 7,300 people since 1987 and over $2,783,000 in assistance to needy people with HIV/AIDS and their families in our community for items such as rent and utilities. We firmly believe we must continue our invaluable financial assistance programs which provide a safety net to people with HIV/AIDS experiencing an emergency financial crisis.
Federal money is steadily decreasing while the rate of HIV cases in Baltimore is still raging. Because federal dollars are shrinking, we need your help more than ever so that we can continue the fight to save our community from the devastation of HIV disease. AAB has worked with Senator Barbara Mikulski again this year to ensure the federal budget provided increases to NIH research funding and continued funding for the Ryan White Care Act for the care and support of people with HIV. We are also still working with national advocates to ensure that all classes of antiviral HIV drugs will be included on new Obama Care Act drug formularies. HIV policy gets more complicated all the time, and it is much harder every year for us to obtain the money we need to fight the epidemic.
Our work affects all who are touched by HIV/AIDS. Eventually all people with HIV/AIDS will need new drug cocktails when their old drugs are no longer working or because they are causing life-threatening side effects. AAB continues to work on government and industry Community Advisory Boards. We are working with industry to continually change the standard of care by ensuring that their new drug pipelines remain robust, and by replacing more older toxic drugs with more effective, better tolerated drugs and new long acting drugs that will not require daily dosing. We are very excited that scientists have begun to work on HIV “CURE”research. AAB is working with government and industry and the national HIV community to make a “CURE” for HIV or what we are now calling “HIV Remission” a reality. Even though this will take years to come to fruition, we have to start somewhere. AAB is a member of the new Martin Delaney Cure Research Collaboratories National Community Advisory Board and is committed to national research advocacy for better, safer new dugs and even“HIV Remission” although this will be a long hard road. AAB is also working with Johns Hopkins researchers to bring additional resources to Baltimore for local cure research projects.
AAB has been instrumental in the formation of the Drug Development Committee of the AIDS Treatment Activists Coalition, a national organization that interacts with the pharmaceutical industry, pressuring companies to study drugs expeditiously and ethically and to include the HIV affected community in all aspects of research and development. AAB is also working with national coalitions like the Federal AIDS Policy Partnership and the Maryland Hepatitis Coalition to obtain new money and services for people with HIV and Hepatitis C Virus (HCV) and people coinfected with HIV and HCV. HCV is a huge problem in the Baltimore metropolitan area. For
example, as many as 50 to 75% of people treated for HIV at Johns Hopkins Hospital and the University of Maryland at any given time may be coinfected with HCV as well as HIV.
AAB is a leading member of the national Fair Pricing Coalition, pressuring“big pharma”to price HIV and HCV drugs reasonably, limit price increases, cap ongoing drug prices for government programs like AIDS Drug Assistance Programs and to initiate co-pay programs for patients with private insurance. We have convinced every major HIV and HCV drug company to create programs that will cover all the outrageously expensive co-pays and other out of pocket (OOP) costs for people with private insurance. Every HIV and HCV drug company now covers all OOP prescription costs like deductibles, co-pays and co-insurance expenses. Our work directly affects Marylanders with ever increasing OOP prescription costs. We are also working very hard to ensure that people in Maryland and across the country who cannot afford their medications get their drugs for free from “big pharma” through Patient Assistance Programs (PAPs). We were very successful in working in conjunction with the National Alliance of States and Territorial AIDS Directors and the federal government to develop one uniform application for the various drug companies so that people need only complete one form instead of four or five different PAP applications when applying for help for free drug cocktails as well as uniform eligibility criteria through an open and transparent process. Our work is way ahead of the curve. This type of advocacy does not happen in any other disease community.
AAB’s Project TEA Time, an HIV prevention program for transgender people that promotes HIV testing and helps people get linked to care and treatment and remain in treatment is alive and well. AAB also continues to conduct community forums to educate people about new HIV and HCV drugs and cutting edge research issues. We have also taken a leadership role in promoting and attempting to organize the metropolitan area’s response to HIV prevention with the use of medication known as pre-exposure prophylaxis (PrEP). On may 13, 2015, AAB is hosting the area’s first PrEP Town Hall Meeting with Chase Brexton which is also co-sponsored by many local service providers.
We are still doing our best to help ourselves. Thanks to the many of you who attended our recent Tea at Brookside at the home of Angie and Blake Cordish which raised over $45,000. We hope you will also support our next Brookside Event on October 4, 2015 which will be bigger and even better. For more information on our events and the latest in HIV and HCV treatment and research information as well as financial assistance and prescription drug access program information , please check out our web site at www.aidsactionbaltimore.org.
Please help us to continue our emergency financial assistance programs and our vital local and national advocacy. We greatly appreciate your continued support in these tough economic times. Thank you in advance for your contribution and for your past generosity. We know you are called on to make many charitable donations. We very much appreciate your continued confidence in our work. Your donation will help us to save lives. We are forever grateful for your trust and loyal support. Remember, now more than ever, without people like you, there would be no AIDS Action Baltimore!
Lynda Dee & the AAB Board
Merle McCann, M.D., Chair
Jake Boone, III
Cameron Wolf, Ph.D., M.P.H.
Our current financial statement is available upon request by contacting AIDS Action Baltimore at 10 East Eager Street, Baltimore, MD 21202 or (410)837-2437. Documents and information submitted to the State of Maryland under the Maryland Charitable Solicitations Act are available from the Office of the Secretary of State, State House, Annapolis, MD 21401 for the cost of copying and postage.
HIGHLIGHTS FROM THE MELBOURNE IAS TOWARDS A CURE WORKSHOP
The International AIDS Society’s (IAS) Towards a Cure Workshop was held in Melbourne, Australia on July 19‐20, 2014, immediately before the 20th International AIDS Conference (IAC). This article will provide highlights of the “Cure” Symposium. I have included numerous presentations from Martin Delaney CARE Collaboratory researchers. I am the co‐cordinator of the CARE Collaboratory’s Community Advisory Board. As a member of CARE, I am more familiar with their “kick and kill” virology work that I will be discussing in this article. There were also a number of immunology and genetic research presentations at this meeting which I have not addressed.
There was a palpable pall over both meetings as a result of the horrible Malaysian Airlines MH 17 crash that killed six IAC delegates en route to Melbourne. Work in the HIV field requires an inordinate amount of flying which is anything but glamorous. While planes do crash, who starts a trip wondering if they will
be shot out of the sky by a surface to air missile! This is a horrific blow to the members of the HIV community who have not experienced such a devastating crash since Jonathan Mann and his wife Hopkins researcher Mary Lou Clements were killed in a plane crash on the way to the 1998 IAC.
Flight MH 17 was shot down over the Ukraine, apparently by Ukraine separatists. It was originally thought that 108 delegates were killed in the crash. Eventually, we learned that six conference delegates were lost on the flight, including former IAS President, Joep Lange, a long‐time Dutch AIDS researcher and giant in the HIV field. We were all very proud of our own Chris Beyrer from Hopkins who is the incoming IAS President. What a trial by fire for his first IAC! Chris did a wonderful job of keeping his powder dry, not announcing the number of delegates lost until the exact number was confirmed.
The IAS did a fabulous job of honoring the dead, but also of making sure the meeting accomplished its vital purpose in the wake of this unbelievable tragedy. I must admit that most conference attendees are all too familiar with death and dying. As a result, most of us were able to continue with our important
work albeit sadly and surreally.
The “Cure” Symposium did not disappoint, although there was some very discouraging news. The most anticipated news of the meeting was a follow‐up report on the “Mississippi Baby” who is now a toddler. Last year I reported on the “Mississippi Baby” who we had hoped would be the second person who was cured of HIV. One of my favorite “cure” researchers Debbie Persaud from Hopkins has lead the research aspect of this case. The baby’s mother did not receive prenatal care. As a result, the baby was born HIV infected, and started antiretroviral therapy (ARV) hours after birth which was continued for about 12 months. Thereafter ARVs were stopped and the baby was lost to follow‐up. The child re‐entered care at about 23 months after birth. There was no detectible viral load at this juncture, and it was believed that giving the baby ARVs so soon after birth may have prevented HIV reservoirs from being seeded throughout its body, and may have actually allowed the baby’s own immune system to combat HIV. The child’s viral load was still undetectable at 24 months. We all hoped that this would prove to be a case of HIV “remission” which is the probably the most accurate way to describe this type of possible HIV “cure”. Unfortunately, there was a viral rebound at 27 months.
While we are all disheartened and feel much remorse for the child and its family, Deb Persaud stressed that these are early days and that we all learned much from this case. We know the child was not what is called an elite controller whose immune systems are able to control HIV without ARVs. Giving the baby ARVs so early apparently resulted in HIV being controlled without drugs for over one year. Research is ongoing to ascertain if there were signals that might describe when it is time to again start ARVs after a treatment interruption. Maybe the duration of treatment was not long enough before ARVs were stopped. Maybe a different ARV regimen might be more effective. Studies of this very early
treatment approach are ongoing in babies and adults.
Jeff Lifson, a non‐human primate (NHP) CARE researcher from the NCI gave the keynote speech of the meeting. He stressed what we know from Hopkins researcher Bob Siliciano’s work. HIV appears to be more and more like cancer. If one hidden HIV cell remains, including dormant HIV cells, the HIV virus
can rebound or become active and infectious. Lifson reported on work from his lab on a “kick and kill” strategy that would attempt to awaken HIV dormant cells with HDAC inhibitors, SAHA and vorinistat used in cancer, which were given to NHPs that were previously on ARVs. Lifson believes that drug combinations will be necessary to awaken dormant HIV cells to kick these resting cells into an active
state, and that combinations will also be necessary to kill these dormant cells once they are awakened, including ARV combinations as well as immune stimulating vaccines that Lifson believes will be a key part of controlling HIV.
Ole Sogaard who is a Danish researcher from Aarhus University Hospital presented the most promising “kick and kill” research at this meeting. He presented data on his work with romidepsin, another HDAC inhibitor used in cancer. Sogaard studied romidepsin in five men and one women for 14 days without toxicity. All participants were HIV undetectable and were all on ARVs for an average of nine years. This
long duration of ARV use reasonably ensures that all participants had only small HIV reservoirs. Romidepsin use resulted in the creation of active HIV particles that were detectable with ordinary viral load tests. This data demonstrates that we can find hidden HIV and shock it out of hiding.
Melanie Ott from the Gladstone Institute who is another CARE researcher gave an overview of Bromodomain (BRD) inhibitors that have also been used in cancer treatment. It appears that BRD inhibitors might be capable of inducing or inhibiting HIV expression in cell models. Apparently, BRD inhibitor JQ‐1 may be able to turn on HIV in resting cells with minimal cell toxicity. It is important to note that many current studies are conducted with cells lines, not in human cells or people. We have a lot more to learn before these compounds are used in people. Much of this early work will be done in human cells once we overcome a number of important scientific hurdles like being able to accurately measure HIV reservoirs. Thereafter studies will be conducted in animals so that we can avoid unknown toxicity in people, including turning on latent pools of HIV hiding in reservoirs throughout the body and causing opportunistic type diseases in people.
Vincente Planelles from Utah, also a CARE researcher, is trying to identify signals that would prevent toxicity like the development of dangerous cytokine storms that might be awakened when latency reversing drugs are administered to people whose dormant HIV has subsequently become active as a result of the kick strategy. Planelles is studying drugs that he hopes will reactivate latent HIV without causing a cytokine storm. He is looking at C7 which apparently does not induce cell/cytokine activation or toxicity in cell models. This will also need to be confirmed in animal studies.
Victor Garcia, also from CARE, presented his work on a mouse model that will hopefully allow us to conduct experiments in mice that will have the same results in people because Garcia’s mouse model has been designed to have human immune characteristics. Garcia’s model has been tested in a variety of cells, including brain cells. If Garcia’s mouse model is successful, people may be spared from the very
real risk of serious toxicities that may be related to participation in “kick and kill” “cure” research.
Dave Margolis, Principal Investigator of CARE, presented data from members of his lab who are trying to develop a human cell model. They hope to create a system wherein experiments are only conducted with human cells, not other cell models. The belief is that experiments in non‐human cell models may not have the same results in human cells. The goal here is to develop a human cell model that can be
used to study the efficacy of single and combinations drugs as well as to describe impact on the immune system and possible toxicities.
As you can see, we are in the infancy stages of HIV “cure” research. We are still studying strategies and research methods in cell lines and animal models. Although a few drugs and strategies have been studied in humans, we have a very long way to go before this research is ready for prime time. We are in the AZT phase of “cure” research and have a very long way to go before we have more answers than questions. But every year we make more progress. I haven’t seen this much excitement and creativity since the early days of HIV research. Mercifully, people aren’t dropping like flies while we are waiting for new developments. We need to ensure that nothing we do during in these early days does more harm than good in people who now have every chance of living a fairly normal life with HIV. Thus, we need to proceed with caution and do our best to quell unreasonable community expectations on the