Friday, October 9, 2015

Help save HIV cure research in Texas!

Exciting update: as of 10/26/2015, the University of Texas is being very responsive and cooperative! I think there will be a solution soon that will make us all happy. Please await updates, and no need to send any emails or place calls at this time while action is pending.


According to the CDC, there are approximately 75,000 Texans known to be living with HIV - one out of about every 340 people. In addition to those individuals, it is estimated that there are nearly 15,000 Texans who are unaware that they too are living with HIV. HIV can be found among Texans of all genders, ages, and races, but certain groups are at greater risk. For example, over 70% of all new cases of HIV were found in men who have sex with men, and African American or Black Texans are four times more likely to contract HIV than those of other races. Additionally, not only are rates of new diagnoses of HIV among youth and women in Texas are also disproportionately high, both of these groups tend to be diagnosed later than ideal.
“And your point is?” you wonder silently. I’m getting there; bear with me. 
Many of us know that things have changed dramatically over the past few decades for people living with HIV around the globe, especially those in resource-rich settings. Due to advances in treatment over the past few decades, especially the widespread use of combination therapy since the mid-late 1990's, HIV is now considered a manageable chronic condition as opposed to the immediate death sentence it was once perceived as. But there are still a number of health challenges people living with HIV face - and there is still no cure. For this and other reasons, HIV research remains critically important for the HIV community. It is to the field of HIV research that we owe most of the advances people living with HIV benefit from today, which include a nearly 90% reduction in perinatal HIV, longer life expectancies, treatment as prevention, once a day medication, and pre and post exposure prophylaxis. HIV research continues to seek important answers about inflammation, common co-morbidities such as hepatitis, neurological impairment, HPV, women’s health, and tuberculosis. There is still a huge need for HIV research.
We are fortunate in Texas to have a sizeable amount of HIV research funding to help address the needs of our HIV population (and the greater community, for HIV is a public health issue that affects us all in one way or another whether you are diagnosed with it or not). There is HIV research in Texas that is targeted to a variety of populations, including infants, children, teens, young adults, adult men and women, transgender individuals, and MSM; there is also research that addresses specific conditions such as cancer, heart disease, and eradication/cure. Some of the nation’s most dedicated researchers are housed here and are committed to working with and on behalf of the HIV community to improve health, improve lives, and hopefully find a cure for HIV. They have made tremendous progress over the years. Yet now this progress is being jeopardized by pettiness, politics, and discrimination. And that is why I am writing this post. I need your help.
HIV research in Texas is in jeopardy - again. Despite bringing in millions of dollars to our state, and serving thousands of people living with HIV, the good ol’ boy system in Texas seems to think HIV research is of little or no value, and seems determined to push out our HIV researchers - and with them, our hopes for a cure. That is backwards, that is discriminatory, that is unethical, and that is straight BS.
David D. McPherson, MD (Chairman of the Internal Medicine department) of The University of Texas Health Science Center at Houston has made an arbitrary decision to take over the office space of the entire NIH funded Houston AIDS Research Team, uprooting the researchers that are currently there and have been there for years, and give the space to Dr. Dianna M. Milewicz (Medical Genetics). This decision was made without involving the team and apparently with little concern about their thoughts and feelings on the matter. It seems to be an obvious retaliation against the faculty and staff of the Houston AIDS Research Team after they considered a move to Baylor College of Medicine after being forced to give up their laboratory space. The team opted to remain and try to co-exist, but unfortunately now they are being forced out of their offices in order to satiate the desires of the aforementioned Medical Genetics researcher. Clearly at UT Houston all disciplines are not created equal. 
The Houston AIDS Research Team (HART) is an invaluable part of Texas’ HIV research. It is a hardworking and diverse team of men and women that is comprised almost completely of people of color (Hispanic/Latino, Asian, and African American/Black), many of whom are bilingual. HART works hard to serve some of the most underrepresented and marginalized individuals in the Houston area and has enrolled nearly 5,000 individuals in HIV research trials over the last two funding cycles. While many HIV research sites struggle to enroll women, HART maintains an enrollment of approximately 30% women. HART also works hard to recruit and enroll people living with HIV who are dealing with substance use, including intravenous drug users (IDU); 5% of its participants identify as IDU. The site also enrolls an impressive percentage of Hispanic/Latino and African American/Black research participants in its trials.
UT Houston has gained over $20 million from NIH grants and over a million dollars of industry grants from the work of HART’s principal investigator since 1997 alone. Currently HART brings in $800,000 annually for its work. With the exception of an administrative assistant provided by the university, UT Houston has NO expenses for HART’s existence - only financial gain.  HART fully pays for itself from the NIH grants (including its AIDS Clinical Trials Funding). It pays for its own staff salaries and benefits, its own equipment, its own supplies, etc.
HART has a demonstrated history of excellence. It is consistently recognized for being an exemplary site in terms of its enrollment and quality of service. A recent study review commended the team, which is first in enrollment for the REPRIEVE study, on exceeding its enrollment targets by a rate of nearly three times what was projected.  The site currently has ten open HIV research studies (studies on HIV and inflammation, heart disease, genomics, hepatitis C, HIV reservoirs, immune activation, monoclonal antibodies, and HIV cure) with seven additional studies that will be open shortly and one study in development. All of these studies enhance the lives and health of Houstonians living with HIV. 
HART deeply values the input and perspective of the HIV community. It provides regular and detailed feedback to its community advisory board and to the other interested people living with HIV in the local area. Additionally, the site works hard to mentor and develop leaders among its staff and volunteers who in turn use their skills to improve the lives of the HIV community through HIV research with the AIDS Clinical Trials Group and broader advocacy. Here is a snapshot of the site’s current leadership/involvement:
  • Dr. Roberto C. Arduino the site principal investigator and leader of the HART Clinical Research Site) is a member of the HIV Cure-Transformative Science Group, a member of the ACTG Executive Committee, and an investigator for HIV research study A5354.
  • Dr. Jose A. Serpa-Alvarez is on the Underrepresented Populations Committee and is the recipient of the 2015-2016 ACTG nationwide Minority HIV Investigator Mentorship Program under Dr. Arduino’s mentorship.
  • Dr. Netanya Utay is member of the End-Organ Disease/Inflammation Transformative Science Group, the Immune Activation and Microbiome Focus Group, the Co-Chair of the A5317 HIV research study, and an investigator for HIV research studies A5331 and A5350. She has also recently submitted a protocol which was approved earlier this year.
  • Dr. Liz Chiao is investigator of the HIV research study A5298.
  • Grady Douglas, RPh, is Vice-Chair of the Pharmacy Subcommittee of the Site Management & Clinical Care Committee and also a member of the Site Management & Clinical Care Committee.
  • Corey O’Brien is a Global Community Advisory Board member for the HIV Vaccine Trials Group.
  • Morenike Giwa Onaiwu is Co-Chair of the Global Community Advisory Board and a member of the Community Scientific Subcommittee. 
  • Krystle Luna is Vice Chair of the Outreach, Recruitment & Retention Subcommittee of the Site Management & Clinical Care Committee, a member of the Protocol Development & Implementation Subcommittee of the Site Management & Clinical Care Committee, and a member of the Site Management & Clinical Care Committee.
  • Maria Laura Martinez is a member of the Site Operations Subcommittee of the Site Management & Clinical Care Committee and the REPRIEVE Site Selection and Performance Committee Coordinator.
The actions of UT Houston have demoralized the entire site team and have left them questioning the future of their site and the viability of the work that they are doing. This can adversely affect performance, which in turn can have a negative impact on our local community. It is not acceptable nor feasible for HART to continue to endure discrimination and microaggressions time and time again when they are simply trying to do their work. There are many cities outside of Houston where these physicians, pharmacists, research associates, community advocates, etc. could find work and not be treated in this way; their skills are marketable and their accomplishments would make them highly sought after candidates. They have chosen Houston - so Houston needs to stand behind them - as do others outside of Houston who care about the important work that they are doing to improve the lives of people living with HIV.  
Will you help? Because we need your help.
The University of Texas (at Houston) is NOT listening to the voices of the Houston AIDS Research team. But hopefully they will listen to the voices of the community. Don’t let politics and drama affect important HIV research in Houston!  Please help take a moment to reach out to them to let them know that you disapprove of this decision and that you are asking them to reconsider! 
I have created a petition on Change dot org that will email the message I have provided below to the following decision makers on your behalf if you sign the petition. Here’s the link: https://www.change.org/p/dr-david-d-mcpherson-dr-dr-giuseppe-n-colasurdo-dr-dianna-m-milewicz-save-hiv-cure-research-in-texas
But if you would like to contact them via email and send your own personal thoughts on this matter please feel free to do so! You don’t have to use this (very short and basic) script! But feel free to do so.
Also, I am hoping you will consider calling Drs. McPherson and Colasurdo and sharing briefly why you think this decision is a poor one and that you’d like them to reconsider. If you have a personal story to share about why you care (such as being a person living with HIV), or if you live in texas, or anything that might really make an impact, please include that information when you call and/or email.
I have provided the contact information below:

Giuseppe.N.Colasurdo@uth.tmc.edu, phone number 713-500-5010 (University President)
David.D.McPherson@uth.tmc.edu, phone number, 713-500-6553 (Department Head, Internal Medicine)
Dianna.M.Milewicz@uth.tmc.edu, phone number, 713-500-6725 (Medical Genetics professor who asked for the occupied HART office space)
Dear Dr. Colasurdo,
I am contacting you to express my grave concern over Dr. David McPherson’s recent decision to uproot Dr. Arduino and the hardworking Houston AIDS Research Team out of their offices at the university in order to give their working space to Dr. Milewicz. This decision risks the important work of this research site and sends the message that The University of Texas does not value the lives of people living with HIV. The Houston AIDS Research Team has brought millions of dollars into the university, is self-sustaining, and conducts vital research for some of our city’s most vulnerable residents. The site deserves to remain in its current offices so that they can continue to improve the health and lives of positive Texas and seek a cure for HIV. I implore you to rescind this unfair decision and allow the Houston AIDS Research team to remain in their offices; please find other office space for Dr. Milewicz. Thank you.