Guide to Gender Identity Terms

Cultivating a stigma-free climate of appreciation and inclusion is one of the Achieving Together Plan’s focus areas. We recognize that language changes over time and we aspire to create shared language that promotes appreciation and inclusion of all people.

While language and usage may change, what’s important is recognizing and respecting people as individuals. People use a variety of terms to identify themselves, so you should always listen for and respect a person’s self-identified terminology.

NPR recently shared a guide to gender identity terms, with the goal of helping people communicate accurately and respectfully with one another.

“Proper use of gender identity terms, including pronouns, is a crucial way to signal courtesy and acceptance. Alex Schmider, associate director of transgender representation at GLAAD, compares using someone’s correct pronouns to pronouncing their name correctly – ‘a way of respecting them and referring to them in a way that’s consistent and true to who they are.’”

You can find NPR’s guide here. The guide, which was created with help from GLAAD, is not exhaustive and is Western and U.S.-centric.

Remember that we are all learning and evolving and we might make mistakes with regard to someone’s preferred pronouns and gender identity, but if that is the case, simply apologize, move on, and be more cognizant of it in future interactions. We know that creating a life-affirming environment that will promote health and wellness for all people is the only way we can truly create a stigma-free climate of appreciation and inclusion.

Want to further explore ideas of gender identity?

  • Human Rights Campaign also shared a glossary of gender identity terms here.

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HIV Medications: Past, Present & Future

Medications to prevent and treat HIV play a critical role in helping to end the HIV epidemic. Since HIV/AIDS emerged in the early 1980s, treatment options have evolved and improved. Let’s take a look at the progression of HIV medications over time, and consider what’s on the horizon.

1980s

The AIDS epidemic officially began in 1981. In June and July of that year, the CDC issued the first reports of fatal cases of Pneumocystis carinii pneumonia and Kaposi’s sarcoma among gay men. The New York Times was the first major news source to report on the epidemic, in a short article published on July 3, 1981.

Several years later, researchers discovered that a failed cancer drug from the 1960s, zidovudine, stopped HIV from multiplying and helped people with AIDS live longer. Also called azidothymidine (AZT), the medication was approved in 1987. Sold under the brand name Retrovir, AZT works by blocking proteins called enzymes that the virus needs to replicate itself.

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The FDA approved AZT in less than 4 months, accelerating a process that usually takes many years. While it helped people with HIV live longer, AZT had a downside, including side effects such as liver problems and low blood cell counts. It was also extremely expensive. Over the next several years, the FDA approved other drugs that worked similarly to AZT. They belong to a drug class called nucleoside reverse transcriptase inhibitors (NRTIs).

1990s

By the early 1990s, HIV was the leading cause of death among Americans ages 25 to 44. A big issue with a single-drug treatment like AZT is that viruses can mutate over time, rendering medications ineffective. 

Until 1995, HIV doctors only had nucleoside reverse transcriptase inhibitors (NRTIs, nukes). This mono- and dual-drug era was one of high death rates and multiple complications.

The FDA approved saquinavir in 1995. This drug, which was the first in a new class of antiretrovirals called protease inhibitors, stops the virus from copying itself at a different stage during the infection.  The introduction of protease inhibitors to medical was revolutionary.  It resulted in suppression of HIV to undetectable levels.

A year later came yet another class of antiretrovirals, called non-nucleoside reverse transcriptase inhibitor (NNRTI). Like AZT, NNRTIs treat HIV by targeting the enzymes it needs to multiply.

These drugs launched a new period of combination therapy for HIV/AIDS. Doctors began prescribing saquinavir plus AZT or other antiretrovirals. This combination therapy was called “highly active antiretroviral therapy” or HAART. HAART lengthened the life span of people living with HIV/AIDS and became the recommended care for HIV in 1996.

Early clinical trials showed the ability of protease inhibitors as part of HAART to suppress HIV and increase CD4 counts. Later, studies reported a steep reduction in the death rate of people living with HIV.

HAART required taking many pills every day. A pill called Combivir was approved by the FDA in 1997. Because it combined two anti-HIV drugs, it was easier to take. Almost 20 years after the HIV/AIDS epidemic began, there were a dozen antiretroviral drugs available.

2000s

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In 2007, the FDA approved the first integrase inhibitor, raltegravir (brand named Isentress). This type of drug offers a different way to stop HIV from replicating. More than 30 HIV medications are now available and many people are able to manage their HIV with one pill a day.

Another significant advancement came in 2010 when research revealed that taking antiretrovirals daily could also prevent people without HIV from contracting it. Truvada was approved as pre-exposure prophylaxis, or PrEP, in 2012. When taken every day, PrEP can lower the risk of HIV to almost zero.

2021

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Cabenuva, the first long-acting injectable HIV treatment, was approved by the FDA in January of 2021. When using the new long-acting injectable, people living with HIV receive a monthly injection from a healthcare provider instead of taking a pill every day.

“Currently, the standard of care for patients with HIV includes patients taking daily pills to adequately manage their condition. This approval will allow some patients the option of receiving once-monthly injections in lieu of a daily oral treatment regimen,” said John Farley, M.D., M.P.H., director of the Office of Infectious Diseases in the FDA’s Center for Drug Evaluation and Research. “Having this treatment available for some patients provides an alternative for managing this chronic condition.”

What’s next?

Research continues on a twice-yearly injectable treatment for treatment-resistant patients. Gilead is expected to file for approval this year for their long-acting self-injectable HIV treatment lenacapavir. Gilead’s long-acting injectable only has to be injected once every six months. If approved, lenacapavir will be the first approved treatment of its kind and is meant for patients who have become resistant to multiple drugs, in combination with other treatments.

The question for a vaccine to prevent HIV continues. Despite progress in HIV treatment, the development of an effective HIV vaccine remains elusive. Janssen’s late-stage mosaic-based vaccine candidate is expected to see initial results from the phase 2b Imbokodo study as early as this year. As of July of last year, all 2,600 patients in the study have been fully vaccinated.

Sources:

https://www.webmd.com/hiv-aids/hiv-treatment-history

https://www.healthline.com/health-news/fda-approves-first-injectable-drug-regimen-for-adults-living-with-hiv#A-breakthrough

https://www.managedhealthcareexecutive.com/view/5-developments-to-watch-for-in-hiv-aids-treatment-and-prevention-in-2021

https://www.thebodypro.com/article/new-hiv-protease-inhibitors

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Rapid Start: A Critical Component of Ending the HIV Epidemic

Prescribing antiretroviral therapy (ART) soon after an HIV diagnosis is referred to as rapid initiation, or rapid start. Research indicates that rapid ART initiation can improve program outcomes, especially by reducing loss to care in the period before ART. Achieving Together sat down with Dr. Gene Voskuhl, Medical Director at the Resource Center’s LGBTQ Health Clinic in Dallas, Texas, to learn more about his experience with rapid start.

“Rapid start is a critical component of ending the HIV epidemic,” says Dr.Voskuhl, who has created and implemented several rapid start initiatives and believes it is an important aspect of HIV medical practice. “I had to be slapped in the face with this one, I’m afraid.” He admits that he initially needed to be convinced that this was the right direction to be moving. “Rapid start is a good idea for two reasons 1) to make the health of individual better and 2) to decrease viral load in community and to decrease transmissions.”

“I came from a time where we did it systematically and in pieces. Unless people were sick and in the hospital, it was usually months before people with HIV were prescribed medications. We lost a fair number of people to follow-up,” Dr. Voskuhl says. “We had a structural system that wanted to educate first, that wanted to explain what a CD4 is, what a viral load is, so we intentionally developed an education process before people started medication. We also had a system that demanded that the provider see lab results before initiating medications. Rapid start does not need either of those. We still educate and we still assess readiness, we just do it a lot faster. Just not fully at the start. You don’t have to be fully educated before you start a medication, you just have to be eventually educated so you can protect yourself.”

Get Everyone on Board

When asked what it takes to start a rapid start program, he said, “Talking, listening, working on attitudes and being ready.” This is true for organizations, prescribers and clients. Within an organization, it is critical to make sure that all staff – nurses to case managers to frontline staff – understand what rapid start is and what it isn’t. Dr. Voskuhl says communicating the basic ideas to everyone in the clinic of why rapid start is important and why we do certain things as soon as someone calls with a diagnosis is particularly important. “We have become pretty aggressive within our practice. Once we become notified that someone is living with HIV, we have 48 hours to connect them to care.” Dr. Voskuhl notes that there is not a consensus on the specific timing of rapid start. Some say a within a week of the diagnosis, some say 48 hours, and some say the same day. “It depends on your system as to how you can set this up. If someone is in a different county you may not be able to get them started the same day but if they are in the same building, we will work with them on that day.”

Prescribers need to understand the science behind rapid start to be comfortable moving forward. One person can make a big difference. If the physician is uncomfortable starting therapy without seeing the lab results, they might not do it. “For me, I have learned that most of the labs are fairly normal, so I feel comfortable starting someone on a regimen, getting the labs a few days later and making adjustments, if needed. With today’s medications you generally don’t even have to make adjustments once you are able to see the labs, the single tablet regimes are highly effective. It is important to pay attention and get your lab results back pretty quickly,” he says. He adds that while he can prescribe medication based on a confirmatory test, the labs must be at least drawn before someone is put on medication. This is an overall safety issue as well.  He also notes that some lab results don’t come back in a timely manner, based on the analysis needed, so rapid start might not be the best for that individual that day.

Patient Responses

While it took some time for Dr. Voskuhl to adopt a new procedure, patients responded positively. “People want the medication that will make them healthier …people want to talk about their options. If you have diabetes you want to get treatment, if you have an infection you want to get it treated, you don’t want to wait two weeks to get started on treatment in those circumstances.”

Dr. Voskuhl can now prescribe a medication for a patient in the clinic at the time he is interviewing them so that the patient can leave the clinic with a medication in hand. He said that this has been a pretty powerful moment for both himself and the patient. “Not everyone does this, but I show them the medication if they are ready and we dose them in the clinic and people can suddenly be in charge of their health care. It’s a subtle shift sometimes but a powerful one.” He reports that people who have started their medication in the clinic come back and he has not seen any dropouts from this. None.

Some people want to wait before they get started, they want to think about it, they want to read a little more or bring someone in with them and he says this is fine. He goes with the patient decision. “Most people are ready to act early on and since the medications are so well tolerated, they take them and go, and they tell me, ‘I didn’t have any side effects so I just keep taking them’.”

Challenges

Dr. Voskuhl acknowledges that there can be challenges to implementing rapid start programs. Some organizations might need detailed protocols or guidance from the state before getting started. He says it’s important to look at how your patients will be accessing their medications – do they have insurance, are they unfunded or will they be on Ryan White? Different authorizations and paperwork can be involved. Another issue is being prepared for having to adjust for health insurance. “If you rush things, sometimes you don’t know what the insurance formulary is and we may give them a sample medication that their insurance is not going to pay for. Then you may have to change the medication down the road which can be problematic.” He is hopeful that moving forward, insurance companies will come on board and that most of the medications will be on their formularies. “There is no reason that we should not be able to access medications quickly for a population that really needs it.”

The Science is Strong

There is strong science behind rapid start, and it is available for those who want to learn more about it. “If you want to serve your patients well, you need to have rapid start as an option. No doubt.” He says there is science that shows that viral load goes down fast with rapid start and there is science that shows retention in care is better with rapid start – all the science is there. “People get to undetectable faster and they’re retained in care better if rapid start is part of your process.”

Dr. Voskuhl ends with, “This is important. If we are talking about ending the epidemic, we have to talk about rapid start as well. You gotta try it. It’s not that complicated and it’s not that hard and it’s definitely for the health of your patients and the health of our community. I just hope people will try.”

Resources

Dr. Voskuhl’s suggests these resources and guidelines for more information on implementing rapid start:

IAS-USA: https://www.iasusa.org/guidelines
DHHS: http://aidsinfo.nih.gov/guidelines
WHO: http://www.who.int/hiv/pub/guidelines/advanced-HIV-Disease/en

For more perspectives on rapid initiation, see these previous Achieving Together posts: Rapid Initiation of HIV Treatment: One Physician’s Perspective and How One Organization Uses Rapid Initiation to Link People from HIV Testing to Care.

Dr. Gene Voskuhl graduated from the University of Oklahoma, where he specialized in infectious diseases and eventually helped launch the University’s HIV Clinic. He later worked at Gilead (the manufacturer of PrEP medication Truvada) as a medical scientist, instructing fellow physicians on how to safely treat LGBTQ patients and prescribe appropriate pharmaceuticals. Volunteering for Resource Center gave him an even deeper insight into the needs of the LGBTQ and HIV populations in North Texas, and further fanned the flames of his passion towards equity in healthcare. He is currently the Medical Director at the Center’s LGBTQ Health facility, which provides affirming and compassionate care in a stigma-free environment.

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Covering Texans’ Condom Needs: Texas Wears Condoms and The Condom Distribution Network

When used correctly and consistently, condoms are an effective way to prevent the transmission of HIV, as well as other sexually transmitted infections (STIs). The Achieving Together team interviewed two organizations in Texas that distribute free mail order condoms online: Texas Wears Condoms and the Condom Distribution Network. The aim of both programs is to reduce the transmission of HIV and other STIs by making condoms more accessible. By creating access to free condoms available online, Texans are able to obtain condoms regardless of their geographical location. Both programs also work to educate communities and de-stigmatize sexual health.

Texas Wears Condoms

“So far, the program has partnered and collaborated with over 150 community organizations/businesses across the state and distributed 1,913,377 condoms (2019).”

Tell us about Texas Wears Condoms.

This project originally began in 2013 at the University of Texas Health Science Center in San Antonio, now known as UT Health. The grant was originally funded only for services in San Antonio, but in 2017 the program received funds from the Texas Department of State Health Services (TX DSHS) to expand its services to all Texas residents.

What are your goals?

The project has three objectives to meet every year, as set by TX DSHS:

  1. Distribute 2,000,000 condoms
  2. Collaborate with 100 community partners (i.e. retail, civic, faith-based, etc.) to include 50 local (in San Antonio) and 50 statewide.
  3. Have 80 distribution sites including non-conventional businesses, clinics/CBOs/ASOs, and community events. 

Aside from the goals listed above, the purpose of the program is to educate the community and help reduce the spread of HIV and STIs in Texas by expanding free condoms access, improving condom knowledge and destigmatizing condoms/condom use. The program focuses heavily on destigmatizing and normalizing conversations around sex.

What will success look like?

Individuals will have access to sexual health supplies, regardless of their location and income.

Condoms and other sexual health supplies will be destigmatized and not associated with any specific risk behaviors (i.e. you use condoms, so you must sleep around).

We want to serve individuals from every zip code and county in Texas, reduce the numbers of STIs and HIV in Texas, and improve condom variety, brand awareness and delivery time for packages.

We also want to further the conversation about PrEP and PEP.

How does the Achieving Together plan/movement relate to this work?

Several of the guiding principles of the Achieving Together Plan are focus areas of the program: social justice, equity, empowerment, advocacy, and community. The program leverages technology, partnerships and community action to deliver a multi-layered prevention framework to address deficiencies in prevention, care, and treatment. Re-purposing an e-commerce website to provide condoms and sexual health supplies to order and mail directly to consumers has minimized the barriers to access and provided communities with an equitable platform. The program has also empowered individuals living in marginalized, under-served, and geographically isolated areas by making condoms accessible and available with unrestricted access.

What have you learned?

Through client surveys, we have identified barriers to condom use, such as cost, embarrassment, or not knowing what kind to purchase.We’ve also learned that individuals want to learn more about sexual health and how they can protect themselves from STIs/HIV, without the sanctimonious aspect. Individuals want to use safe sex supplies (condoms, lubricants, dental dams), they just don’t always know where to access them, or how to bring up the conversation with their partners.

Social media is a great avenue to connect with your audience and disseminate factual, sex positive information. It can help grow your program’s following organically and with little to no cost.

Finally, we’ve learned that not a lot of people know about PrEP and its benefits.

Condom Distribution Network

“We have decided to focus our efforts in 2020 toward getting younger MSM of color to access our CDNStore this year. This year, our goal is to send at least 65% of our condom orders to 12-35 year-old MSM of color.”

Tell us about the Condom Distribution Network.

The Condom Distribution Network was started in 2014 by AIDS Services of Austin (now Vivent Health) as a way to reach more people through condom distribution. The online store (CDNStore.org) opened around 2016. AIDS Services of Austin (ASA) realized that with so many people of color moving out of central Austin, we needed a way to make it easier for people to get free condoms from ASA without having to come to our locations. We ship free condoms to people in Travis, Williamson, Bastrop, Caldwell, and Hays counties.

We changed our ordering process to make it easier for people to order from us as well as made changes to the way our website looks to give our store a new look. We will be adding videos in both English and Spanish so that people can learn how to put on a condom.

What are your goals?

Our goal is to help more people get access to condoms by removing access as a barrier. We have decided to focus our efforts in 2020 toward getting younger MSM of color to access our CDNStore this year. This year, our goal is to send at least 65% of our condom orders to 12-35 year-old MSM of color.

How does the Achieving Together plan/movement relate to this work?

By normalizing condom use, we believe we can address the stigma around sexual health and testing.

What have you learned?

At ASA, we know that our data can be a great ally to understand what people need. In July, we rolled out our new survey, which captures sexual health information. Within the first month we found that 64% of people who ordered condoms in July had never been tested for syphilis. In response, ASA created a quick one-page infographic with syphilis information, testing recommendations, and locations that were sent out with every condoms order. We were able to see that percentage drop within three months.

ASA has learned that there is still very much a need for condoms in the community and that most people, if given information about this resource, will use it. What we have to do now is make sure this program is getting into the communities that need it and would benefit the most from this program. 

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RAPID INITIATION OF HIV TREATMENT: ONE PHYSICIAN’S PERSPECTIVE

Better medications and new strategies help make it possible to achieve our goal of ending the HIV epidemic in Texas.  For a person with HIV, antiretroviral therapy (ART) dramatically reduces HIV-related morbidity and mortality. Immediate linkage to care and treatment is essential for someone diagnosed with HIV. Sometimes called “rapid start” or “test and treat,” rapid initiation is a process that connects newly diagnosed people to treatment and medication within a very short time period, ideally one day.

Achieving Together interviewed Dr. Ogechika Alozie, Medical Director of Sunset ID Care in El Paso, Texas, about his experience implementing rapid initiation.

Please tell us about the use of rapid initiation at Sunset ID Care. When and how did it begin?

For us, the conversation around rapid start was something we began entertaining around 2016 or 2017. This was around the time when UCSF made their initial data presentation about their work with rapid initiation. We began to realize that the faster we got someone onto medication, the better. We also had a host of medications that could be given early without any higher risk of resistance. In 2018, we at Sunset ID Care started really thinking about it and got some money from the state and the feds to create our HIV Navigator position. I often talk about PPT: People, Process, Technology. This is what made implementing rapid start possible. We had the person, the Navigator. This role was really important in terms of creating a liaison between the testing location and getting people into care. We worked out the process, which was how we were going to operationalize things. We also had a range of technology available, including an EMR and text message service. So, we decided to try it out. At first, we thought: Should it be a week? Or 72 hours? Then we decided, no, let’s go for (starting medication) the same day.  So that’s how we designed the program. The more we tried it, the more our partners, including the health department and county hospital, started seeing the efficiency of being able to diagnose somebody and get them on a pill the same day.

What challenges have you faced in doing this? How have you addressed them?

Initially, the biggest challenge was getting people to believe we could do it. It took a long time to get funding for the Navigator position and other things we wanted to do. The next step was operationalizing it and working out the process. I often tell people that everything doesn’t have to be perfect on day one, but you have to have a direction and you have to have a goal. As you’re going along, every two weeks or month, look at what’s working and what’s not working and tweak things. We would continually adjust until the process was smooth. With our processes in place, fast-forward to COVID times, and we were able to transition quickly to telemedicine.

Establishing relationships was critical to our success. We don’t do testing internally.  We’ve never been set up like that – we deliberately set ourselves up as the referral site. We focused on what we thought we could do really well. We wanted to make sure that our partners, especially the health department, understood that we were the go-to for HIV treatment.

Sunset ID Care is a standalone clinic but we partner with Project CHAMPS and we’re all in the same building, so we have the case management side and clinical side co-located. It’s helped us create a really good cohesiveness and work flow to allow us to provide the best possible care for patients. 

In terms of patient linkage to care, what have you seen since starting rapid initiation?

The biggest thing is the reality that if you give patients the option and opportunity to engage with healthcare quickly, they will do it. We’ve had this misconception in the past that people need time to be mentally ready for care. And there may be people who are like that. But what we’ve seen time and time again is that people want their care. If you give them a system that works, they will come into that system.

Once upon a time, we in HIV wanted the clinical staff or the case management staff to do the role of the HIV Navigator.  It’s possible to take case managers and have them adapt to that role, but anyone who has do that as their part-time job isn’t going to do it as well, because the value of an HIV navigator isn’t just navigating the patient into the system, but it’s creating relationships with outside partners. Historically, we in HIV have failed at partnering with each other. We think one organization wants to eat the whole funding pot. If you focus on what you do well, you can partner with people who do other things on the spectrum. Our organization has specifically and deliberately decided not to grow outside of what we do really well. We bring in partners to extend the services our patients receive. I think that attitude, of wanting to build partnerships and bridges has helped us.

It’s hard to say what the direct contribution of rapid start is to our community viral load. I understand from our data that our community of El Paso, as a whole, is doing well in terms of the spectrum of care and viral suppression. I don’t think it’s a simple cause and effect – I believe in bundles of care. One intervention isn’t the sole intervention that causes anything to change, but when you stack interventions on top of each other, you get a bundle effect that provides improved care, improved cohesion, and hopefully improved patient satisfaction.

What tips or recommendations do you have for other organizations who are interested in implementing rapid start?

It’s a journey. Each organization comes from a different stage in that journey. If you’re starting from scratch, the biggest thing that people need to understand is that inertia paralysis is the biggest problem. People get so freaked out by the process that they never do anything. They put a committee together, they give one or two people a task, and two years later they still haven’t done anything. I tell people all the time that you have to try. You can’t score unless you shoot. Be willing to fail fast. That’s the key. Failure is not the problem. But, if you’ve failed for three years, you’ve stunted the growth of your organization. Be able to fail over 90 days and then pivot. Be willing to look at what happened, what went wrong, and how can it be fixed.

For my physician colleagues, I’d say: Stop trying to be the quarterback. This is more like soccer. We’re all on the playing field, we all have a role. When we start thinking we’re the boss, we become less willing to delegate tasks. You have to allow the clinical pharmacist, the nurse practitioner, the RNs to take on some of the challenges and some of the clinical pieces. 

What resources/information do you suggest would be useful for an organization just starting out with implementing rapid start?

Texas DSHS is a great resource. AETCs across the state also provide a wealth of knowledge. They’re able to bring together people from across the state and outside the state as well.

Thank you, Dr. Alozie, for sharing your insights with us! Be sure to check out our previous interview with Abounding Prosperity about their use of rapid initiation.

Dr. Alozie is an infectious disease specialist serving patients in El Paso, Texas. Dr. Alozie is board-certified in infectious disease by the American Board of Internal Medicine (ABIM). He is also board-certified in clinical informatics by the American Board of Preventive Medicine (ABPM), making him one of less than 100 such certified physicians in the state of Texas.

He is a Fellow of the American College of Physicians (ACP). Since 1975, over 35,000 physicians have earned ACP Fellowship, a mark of distinction representing the pinnacle of integrity, professionalism, and scholarship for those who aspire to pursue careers in Internal Medicine

Dr. Alozie received his medical degree from the University of Benin – Faculty of Medicine in Benin, Nigeria. He completed his residency and internship in internal medicine at Hennepin County Medical Center, followed by his fellowship training in infectious disease at the University of Minnesota.

He was recognized as the 2016 “Best Physician in the City” by City Magazine, El Paso. He was also awarded the “Pharmacy Award for Innovative Practice” by the El Paso Pharmacy Association in February of 2018. As an infectious disease specialist Dr. Alozie believes patient care is the most important part of medical care.

Learn more about Dr. Alozie and read a press release from Health News Today.

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