Making Progress in HIV Care Every Day: Remembering the Past to Look Towards the Future

HIV/AIDS Information at the Point-of-Care is a collaboration between the Lamar Soutter Library, UMass Memorial Healthcare (UMMHC), and AIDS Project Worcester (APW). The project encourages the use of evidence-based health information from the National Library of Medicine (NLM) to improve the understanding of health information by patients and enhance the conversation between healthcare providers and patients on health topics.

Using funds from the contract, APW hired a part-time outreach worker to connect patients and their families with health information from NLM. Kristin, the outreach worker, also provides information to APW staff and volunteers about health information from NLM.

One of the challenges faced by Kristin, and most people when they are first introduced to NLM resources, is the vast amount of information available from NLM and other reliable sources. After training with the project librarian, Kristin continued researching HIV to gain a better understanding of HIV treatment and prevention options for patients. She created a notebook of handouts and resources to focus her meetings with clients and patients. The most popular handouts are HIV/AIDS Information from NLM Web Resources Flyer (https://sis.nlm.nih.gov/outreach/hivaidsinformationresources.pdf) and the Wallet Card (https://sis.nlm.nih.gov/outreach/hivaids_card.pdf). The most popular web sites are MedlinePlus (https://medlineplus.gov) and AIDSource (https://aids.nlm.nih.gov/)

The focus of Kristin’s outreach is using NLM resources to explain Pre-Exposure Prophylaxis (PrEP) for HIV-negative individuals who are at high risk of contracting the HIV virus and using the resources to explain antiretroviral therapy (AVT) for HIV-positive individuals to prevent transmission to others. Kristin was “blown away” by the advances in medicine with the introduction of AVT and PrEP.

Current HIV medicines help control HIV infection, which helps protect the immune system and reduce the risk of serious infections. Rather than taking a handful of pills multiple times a day, AVT consists of one or two medications taken once or twice a day. The medications help in two ways:

  • Lowering the viral load (the amount of virus in the blood). HIV medicines help people living with HIV achieve an undetectable viral load, meaning the amount of virus in the blood is so low that it can’t be measured by a test. Being undetectable does not mean that the virus is gone. However, it greatly reduces the risk of transmission to others.
  • Raising the CD4 T-cell count(the number of cells that fight infections in the body). Reducing the HIV-1 viral load can help raise CD4 T-cell number, which helps make the immune system stronger.

The National HIV/AIDS strategy is described at https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview?ct=t(endingtheepidemic). The federal initiative works to accelerate progress and end the HIV epidemic by directing new funds to communities affected by HIV in a phased approach, starting with the areas with the highest-burden. The initiative seeks to reduce the number of new HIV infections in the United States by 75 percent within five years, and then by at least 90 percent within 10 years, for an estimated 250,000 total HIV infections averted.

The initiative may seem like an impossible dream. However, let’s take a step back and see where we have been.

APW has a very interesting piece of art in their Board Room by the artist Charles R. Shields, Jr. Mr. Shields “was born in Worcester and died in 2002.  He was an AIDS activist, speaker, and playwright, and wrote many articles on AIDS and created art for Worcester Magazine.”[i] Many of his HIV/AIDS-related pieces express the challenges and hopes of people impacted by the disease.  Not that long ago, if you were diagnosed with the HIV virus, that meant you were going to get AIDS, and AIDS meant you were going to die. The sculpture below is the hood of a car that is filled with prescription pill bottles on the bottom and the side. There is the mouth of a person on the bottom with a stream of pills going into the mouth. (The picture in the center is the entire sculpture. I included closeups of the sides.) This was the reality of HIV/AIDS a little more than a decade ago. The reality today is that it is possible to live a normal life if you are HIV positive. You have to believe that with a focused federal effort it is possible to significantly reduce the transmission of HIV in the United States over the next ten years.

UMASSS

____________________________________
[i] Obituary. “Charles Robert Shields, Jr (1947-2002)” Find A Grave, Sentinel & Enterprise (Fitchburg, MA), Saturday, March 23, 2002.  www.findagrave.com/memorial/107636580/charles-robert-shields (Downloaded August 5, 2019)

 



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