Q&A with Dr. Emily Rymland, HIV Care Expert

Meet Dr. Emily Rymland, DNP FNP-C, Clinical Development Manager here at Nurx. Emily has a deep background in Women’s Health, including working at Planned Parenthood, and is a legitimate shero in the field of HIV treatment and prevention. In addition to her work with Nurx, Emily runs a small bush clinic in rural western Uganda called the Buseesa Community Development Centre. We sat down with Emily to learn how she became passionate about HIV medicine, and get her advice for Nurx patients.

How did you decide on a career in medicine?

I have a degree in theater directing and I thought my career would be in the arts. I come from an artsy family and medicine wasn’t in my background, at all. But when I was working in theater in San Francisco in the 80s many of my friends started getting sick with AIDS, which was a new illness at the time, with really no medical treatments at all. It was horrible to watch my young friends getting sick and turning into old men. Something like 30% of my friends died, and I know gay men who lost 80% of their friends. I started volunteering at a hotline run by the San Francisco AIDS Foundation, back when we knew almost nothing about the disease. I hated watching HIV as a bystander so I went to Nurse Practitioner school to be an HIV specialist. I had also become a single mother along the way and figured medicine might be a more reliable way to make a living than theater.

What was it like treating HIV in your early days as a provider?

One of my first jobs was as a hospice nurse, because when I graduated in 1994 AIDS was still killing a lot of people. The first drugs developed for HIV, like AZT, did save some lives but were really toxic with awful side effects. It led to severe anemia and nerve damage. Some patients had to take 18 drugs a day, drink horrible tasting liquids, and stick to really difficult regimens.  It was the beginning of a miracle but it was a rough start. It was an honor to be there even if being there meant sitting quietly as someone passed.

When did the tide start to turn, making HIV a chronic condition instead of a death sentence?

In the mid-90s they developed a cocktail for medications that weren’t so toxic, and things have improved from there to where we are today, which is that if you have access to HIV treatment and stick with it you can easily live your full lifespan and not even pass the virus to your partner. With the medications you take now if you take your pill every day you’re going to die of something else. Honestly, if I had a choice of being diagnosed with HIV or diabetes I would choose HIV — there’s less risk of losing your vision or losing your kidneys, and it’s less complicated to manage than diabetes.

Overall, the state of HIV prevention and treatment is way better than I hoped back in the 80s and 90s. I don’t know that we ever thought we would get a preventive medication like PrEP. And now that we know that “undetectable equals untransmittable,” which means that an HIV positive partner on medication won’t spread the virus to HIV negative partners, combined with PrEP, is very exciting . . as long as we can get these medications to everyone who can benefit. I have been taking care of HIV positive people for 98% of my career — I said I wouldn’t quit until there’s a cure, and here I still am. 

Even though HIV is now a manageable chronic condition, is there still fear and shame around it?

Yes, the stigma is huge even today. I have had to meet patients around the corner from the clinic at a coffee shop, because they were so scared of being seen going to an HIV clinic. The stigma can be especially strong in very religious areas, like some parts of the South, and in more rural areas. Also some people who were around during the early days of AIDS have survivor guilt, and feel like they don’t deserve to live with HIV because they lost hundreds of their friends and can’t understand why they survived.

Part of your role at Nurx is delivering the news to people who test positive for HIV through one of our STI or PrEP Home Test Kits.  What is that like? 

It can be hard when the patient doesn’t have access to quality care or good information about HIV. Sometimes patients in rural or less accepting areas have no idea where to go for care. Recently we had a Spanish speaking patient who was convinced he was going to die — we spent an hour on the phone with him educating him about HIV and convincing him that it wasn’t a death sentence. We have come a long way but there are still too many people who are isolated from good care and information. But one upside to telehealth is that the patients often open up to us in a way that they might not in an in-person setting in their communities, and we’re able to give them as much time as they need. I like that patients can write whatever they want to us and they’re not embarrassed.  We give them the space to do things on their terms. I tell them “You’re the boss — I work for you!”

How did you wind up starting a clinic in Uganda?

Most of us in HIV care have been really concerned about what’s going on in Sub-Saharan Africa, so many people have died there that it’s really affecting the family structure and income of the region. In 2013 some friends asked me to go to Uganda to do medical outreach in partnership with a nonprofit that does microlending, so I traveled there with a bunch of nurses and pharmacists. We went to the bush with just chairs and tarps to set up a little clinic, and in one week we saw 1700 people who had no other access to medical care. Of the people we tested for HIV 7% were positive, plus we saw lots of malaria, typhoid, malnutrition, tuberculosis, all diseases of poverty. I felt like I couldn’t do enough just visiting, so I decided I needed to join the board of the organization and start a clinic.

Now the clinic is up and running, staffed by local Ugandans who have grown up in the community. We have a huge HIV prevention, education, and testing program. It’s especially important for women there, because in many cases they have no sexual power whatsoever, and may be one of multiple wives and that sort of thing. If they get HIV they’re at risk of transmitting it to children, and they could leave orphans behind, so it’s very very important to get them this care. At first they might be very hesitant to talk to us, because there are no real laws there around medical confidentiality but over time they’ve learned to trust that we’re not going to disclose anything, and they feel safe and open up. This community has no money and if it weren’t for the clinic they’d have to travel 30 miles to get their medication.  [You can donate to Emily’s clinic here.]

What do you wish more people knew about HIV?

People should know that HIV is a totally survivable, manageable condition, but getting tested and getting on treatment early is the key to a long life! So get tested! This message is especially important for women who think this won’t affect them, but they’re wrong, and for guys who think they can’t get it from girls — that’s a huge misconception. I had a patient who was a freshman at UC Davis. She kept getting sick and they didn’t know why and doctors didn’t even think to test her for HIV because she didn’t fit their idea of what an HIV patient looks like. Somebody finally thought to test her, she tested positive and she had had such a late diagnosis that she had full-blown AIDS. Thankfully she was able to get on treatment before it was too late. If you have any doubt about the status of your partner or partners, get tested regularly. Tell your sisters, your friends, your mom to get tested! Normalize it! Get rid of the stigma around it. 

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