We take a deeper look at Nelson Vergel’s experience with Trogarzo®, an infused treatment for HIV. This is the experience of one patient and may not be representative of all Trogarzo® patients.
TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used with other antiretroviral medicines to treat HIV-1 infection in adults who have received anti-HIV-1 regimens in the past, and have HIV-1 virus that is resistant to antiretroviral medicines who are failing their current antiretroviral therapy. Please find complete safety information at the end of the article. For more information about Trogarzo® visit Trogarzo.com.
Hi Nelson, could you introduce yourself?
My name is Nelson Vergel, and I live in Houston. I have been HIV-positive for over 34 years. I have been a long-term survivor. I am also a long-term HIV activist and patient.
What has your HIV journey been like?
Well, most of us with HIV that have been long-term survivors are long-term survivors for a reason.
For some, it is luck, but for most of us, it is because we are exercising, trying to eat well, and trying to manage stress. Most long-term survivors have been positive for over 25 years and have developed many resilience skills.
And I’m one of them. Ever since I found out that I was HIV-positive when I was in my early twenties, I started to exercise. I knew I was in control of that and of eating better and trying to avoid unintentional weight loss. That helped me live a better life, but with a detectable viral load, I knew there was nothing I could do back then to avoid eventually getting sick and dying.
Would you tell us more about how you eventually started treatment with Trogarzo (ibalizumab-uiyk)?
My doctor told me there was a new option in a study. I needed a new option because I was struggling with getting my viral load undetectable for 27 years, and my T cells were already dropping. I was in constant worry, so I jumped at the opportunity.
I started Trogarzo six-and-a-half years ago, as part of a Phase 2b study, here in Houston.
I’m the director of a nonprofit called Program for Wellness Restoration, and I lectured around the country every week about health. I was the only one, or one of the few, in the room that was still worrying about viral load. So that was the irony of everything. I was taking care of myself by taking all my pills. I never had a problem with adherence, and yet I was struggling still with controlling my viral load. I was one of those patients who had joined several HIV studies only to develop resistance to the study drug because they would give us one new one at a time. We now know that we need 2-3 active agents to control our virus.
I had the luck of having two other active agents that could be combined with Trogarzo. That regimen did it.
Within two months, for the first time I had an undetectable viral load. I didn’t believe it at first because you never know, it’s always like: “Well, how long is this going to last? And don’t get too cocky!” So you get excited, but not really.
But as months went by, I started feeling more secure that maybe I wasn’t going to die of this thing and now we’re talking six-and-a-half years, and I’m like: “Wow!”
My life has changed dramatically because, for the first time, I have had an undetectable HIV viral load for over six years now.
I was able to restart my life again. I had put my life on hold for easily 27 years doing some nonprofit work, educational work, but now I am running two businesses plus my nonprofit. I don’t have that anxiety that I used to have; I had constant daily worry about what was going to hit me next.
Trogarzo gave me that peace of mind.
Imagine regaining viral suppression, even if other HIV-1 treatments have failed you. TROGARZO® a breakthrough in HIV-1 treatment, the first and only long-acting antiviral, designed specifically for those with second-line regimen failure.
Tell us a bit about Trogarzo.
It is a monoclonal antibody, very different from all the oral medications. It’s the first long-acting medication that lasts long in the body.
The big difference about Trogarzo is the fact that it is a new class of medication. Actually, it works on a receptor on the CD4 cell.
It’s not a drug that works by itself; no HIV drugs do — it needs a combination of other active agents.
I get it via IV every two weeks. I have done this 156 times which hasn’t been a problem for me. It doesn’t hurt really. When the drug goes through your veins, it’s like saline. I do not feel any difference. I never had a bruise.
[I have not experienced] side effects. Basically, the drug is like saline with no gut side effects, no fatigue, no flushing, nothing! (Experience may vary from patient to patient, please read complete safety information at the end of the interview, the most common side effects of TROGARZO® include diarrhea, dizziness, nausea, and rash).
I am willing to keep [taking] this drug until I die because it is keeping me here and healthy. I am working out. I take care of myself. But nothing you do while you have a detectable viral load will really save your life. You can delay your death, but only [by] controlling your virus, and taking care of yourself can save your life.
As an activist, I follow this field very closely. I was thrilled to see this drug finally approved. I want people to have access to it because it changed my health; it changed my outlook on life.
What are the benefits for the patient in its daily life?
Well, for me, the most significant benefit, the biggest change in my life is removing the fear of death. I know everybody is afraid to die, the HIV negative, positive, cancer, or not or whatever. But we have a daily conscious presence of death and illness in HIV when our viral load is not undetectable.
All of us, I’ve been around for so many years as an activist, as an educator, and all of us, when the viral load is not undetectable, we all have this anxiety inside. Some of us suppress it, some of us don’t. Some of us live with this anxiety and depression.
Once you get a new drug like Trogarzo, you remove that anxiety and then people — like me — start being productive and happier. If you are not worrying so much about being sick, you have a lot more time. I have a lot more time to spend, to be present with my family, and develop relationships.
Say that you’ve always had this fear and then after a few months of having an undetectable viral load, you realize “Oh my god, I have this much free mental space to do a feast with my life rather than worrying about my next illness, my next challenge.”
I’m looking forward to the day when all patients like me know all of their options and can make their own choices.
Can you walk us through how you integrate Trogarzo into your routine?
Every two weeks, I leave the house at around 10:15. I have my appointment at 11. They call me in and by 11:30 I’m gone. I’m going back home to work.
It takes an hour-and-a-half of my time every two weeks. That’s a very low price to pay for surviving!
I am able to see my doctor more frequently [Trogarzo’s dosing schedule requires an infusion every two weeks], and that actually has a lot of advantages as you get even better care. Even when you have the flu or cold you get medication faster and treatment faster because you see your doctor or nurse more frequently.
The only thing that may be a problem is traveling overseas for more than two weeks, [as I need] to get my infusion on [schedule], but I have managed over six-and-a-half years. I have traveled. I take 13 day vacations, and that’s fine.
What would you say to somebody who is hesitating to prescribe or take that treatment?
Well, some physicians may have some reservations about prescribing a medication that is provided by intravenous administration because they assume that a patient may not like it or that it may be too much trouble.
But I think those are assumptions and you have to be careful because some of us, we want to be asked.
So, all of us as patients, we deserve to be provided all the options and allow us to make the decision. A physician should not be deciding for us when it comes to assuming that an IV is too much trouble — ask us.
Most patients want to live. Most patients don’t want to worry about their health. So, when there’s an option that can do that, in combination with other active agents, then we should be provided the option. It’s up to us whether to say yes or no.
What advice do you have for people struggling to identify the right regimen to control the virus?
I would say do not give up. Talk to your doctor about all HIV treatment options including ones that are not taken by mouth. To achieve undetectable viral load, remember that we need at least two HIV medications that our virus has not developed resistance to.
Ask your doctor to show and explain your genotype test results. You are not alone; join online HIV communities like pozhealth (send an email to [email protected] or look for pozhealth on Facebook) where you will be able to chat with others who have conquered HIV multi-drug resistance. Even if you have no insurance or limited medication coverage, there is help out there!
What advice do you have for dealing with stress when managing a life-long disease, and has the pandemic changed your approach?
Worrying about your health every day is not an easy thing to do. Talk to others going through the same issues that you are going through; you are not alone. Try to do things you enjoy to get your mind off thoughts that you worry about. Isolation is a very dangerous thing to go through, especially through the COVID pandemic. Go for a daily walk, exercise, try to get enough sleep, listen to music, join online communities, and try to avoid the negative energy that is surrounding us every day in the media.
Last but not least, reach out to your local HIV organizations if you are concerned that you may not be getting the best care you need. Switching doctors may seem hard to do, but it can be life-saving if your current doctor does not seem to listen to you.
Are there new, COVID-specific worries and challenges for those living with HIV?
Several studies have shown that the incidence of depression and anxiety may be higher for those of us living with HIV. COVID and the current political situation in our and other countries have made this worse. We need to find ways to reach out to others even through social distancing to avoid the isolation that may push us into low mood and despair.
IMPORTANT SAFETY INFORMATION
What is TROGARZO®?
TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who:
- have received anti-HIV-1 regimens in the past, and
- have HIV-1 virus that is resistant to antiretroviral medicines, and
who are failing their current antiretroviral therapyIt is not known if TROGARZO® is safe and effective in children.
Do not receive TROGARZO® if you have had an allergic reaction to TROGARZO® or any of the ingredients in TROGARZO®.
TROGARZO® can cause serious side effects, including:
- Allergic reactions. TROGARZO® can cause allergic reactions, including serious reactions, during and after infusion. Tell your healthcare provider or nurse, or get medical help right away if you get any of the following symptoms of an allergic reaction:
- Trouble breathing
- Swelling in your throat
- Chest pain
- Chest tightness
- Hot flush
- Changes in your immune system (Immune Reconstitution Inflammatory Syndrome) can happen when you start taking HIV-1 medicines. Your immune system might get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your health care provider right away if you start having new symptoms after receiving TROGARZO®.
The most common side effects of TROGARZO® include diarrhea, dizziness, nausea, and rash. These are not all the possible side effects of TROGARZO®.
Before you receive TROGARZO®, tell your healthcare provider about all of your medical conditions, including if you are:
- Pregnant or plan to become pregnant. It is not known if TROGARZO® may harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with TROGARZO®.
- Breastfeeding or plan to breastfeed. You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Do not breastfeed if you are receiving TROGARZO® as it is not known if TROGARZO® passes into breast milk. Talk with your healthcare provider about the best way to feed your baby during treatment with TROGARZO®.
Also, tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
For more information or medical advice about side effects, ask your healthcare provider. You may report side effects to the FDA at 1-800-FDA-1088 or the THERA patient support® at 1-833-23THERA (1-833-238-4372).
Please see full Prescribing Information for TROGARZO® on Trogarzo.com