Real People, Real Views
Interview with Maria Mejia
- an activist and woman living with AIDS
Q: How long have you been HIV-positive?
A: I have been living with HIV for almost 26 years. I was infected at 16 and diagnosed at 18. It was 1991. After 10 years of not getting treatment and refusing it, I was diagnosed with AIDS. I also had cancer in my uterus.
Q: You waited nearly 10 years to start receiving treatment. Why?
A: I was afraid and young. At the time, they were giving large doses of AZT [an anti-HIV drug also known as ZDV, or zidovudine]. It was my only option, and they wanted me to sign a waiver that said it could damage my internal organs. I was scared.
I almost died because of the decision not to take meds.
Q: Why did you finally decide to get care?
A: I was diagnosed with AIDS with a T-cell count of 39. I also had cancer in my uterus. This is why I decided to get on medication. I just wanted to live. I was given one month to live if I didn’t start my medications. I am so glad I chose to live, because I love life. I was a caterpillar that turned into a butterfly that is going all over the world spreading the message of hope! My mission is simple: Give hope to the hopeless and save lives by sharing my life story. I also have accomplished many important things. I have the love of my life, Lisa; family; and friends that love me. Most importantly, I love myself!
Q: What’s your advice to women and girls who have been recently diagnosed with HIV?
A: I want them to understand that there is life after HIV/AIDS. The most important things are to love yourself, take your medicine, and live a very healthy lifestyle. I have come so far! I will never give up. You have to fight till your last breath. On hard days, I know my spirit is stronger than my body. I am a very spiritual human being, and this helps me keep on trucking.
Q: What do you think is the biggest misconception about living with HIV/AIDS?
A: The biggest misconception is that you are going to die! That your life is over and no one will ever love you with this condition! This is far from the truth. You can live a full life with HIV/AIDS. I may be living with AIDS, but first I am a woman. Just follow your treatment plan and do not let a virus define you.
Q: You were young when you were diagnosed. Has your status affected your romantic relationships?
A: I have been blessed! No one has ever rejected me. I am upfront, and I have learned to have high self-esteem. I also pick people that are educated about the disease. You can teach people how you want to be treated. Never settle. I am very happy and married to the love of my life, Lisa. She is my soulmate and partner in life. We have been together for eight and a half years and she is HIV-negative.
Q: Why should women and girls know their status?
A: Women and girls should take control of their health. Know your status for yourself and for the person you are involved with. Getting tested helps you take control of your health. If you happen to have HIV, you can get treatment and live a long life. If you are negative, you can take steps to remain that way.
Q: Is there anything else you’d like to share?
Remember, we are more than a virus. HIV/AIDS is not a moral condition, it is a human condition.
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Interview with Anthony S. Fauci, MD
- a doctor recognized with the Presidential Medal of Freedom for his leadership in international research against HIV/AIDS
Q: What was the first indication that this might be a new epidemic?
A: I remember reading the first report in the CDC's Morbidity and Mortality Weekly Report (MMWR) on June 5, 1981, of 5 patients from Los Angeles with Pneumocystis carinii pneumonia (PCP). I was struck by the curious nature of the fact that they were all gay and all previously healthy. I kept it in the back of my mind, but went on with my business. On July 4, 1981, the second MMWR report came out, describing 26 men, otherwise well, who had PCP and some with Kaposi sarcoma. Again, all were gay men. It was at this point that I developed goosebumps realizing that, although we did not know what the etiologic agent was, it was almost certain that we were dealing with the beginning of a new epidemic whose scope we could not have imagined at that point.
Q: What attracted you to this field?
A: Clinically and from a research standpoint, I was trained in infectious diseases and immunology, and I had been studying the regulation of the immune system. Here was a disease that I realized at the time was almost certainly an infectious disease and it was attacking the immune system. It was almost as if I had been training for years to study this new disease. It was a natural fit.
Q: Why did you persist in pursuing AIDS in spite of the early challenges?
A: I felt passionately that this would evolve into a major pandemic despite the fact that it was apparently epidemiologically restricted at the time. I actually wrote a commentary to this effect in the June 1, 1982, issue of the Annals of Internal Medicine.
Q: What was it like in the beginning of the epidemic?
A: It was extraordinarily challenging and exciting, but very sad and discouraging. I began in Fall 1981 to admit patients with this strange disease to the NIH Clinical Center. Prior to AIDS, I studied patients with immune-mediated diseases such as Wegener's granulomatosis and other systemic vasculitides, and for the most part we made them well with innovative therapies. With AIDS, we were dealing with drastically ill patients, almost all of whom died during those early years.
Q: List some major successes and/or missteps of HIV/AIDS advocacy and research efforts.
A: With regard to advocacy, the major successes were capturing the attention of the researchers and regulators and getting them to realize early on before there were any approved drugs for AIDS that AIDS was different and drugs needed to be made available under creative mechanisms such as "Parallel Track" to those who had no other access to drugs that were restricted to clinical trials and that would have any chance of helping them. There were really few missteps by advocacy efforts except for some rare ones that were more disruptive than productive.
With regard to research efforts, there were many successes such as the discovery of HIV, the development of a sensitive, specific, and simple diagnostic test, and most importantly, the development of a menu of highly effective antiretroviral drugs that have transformed in a positive way the lives of so many HIV-infected people throughout the world. The missteps might have been to move a bit too slowly in realizing the importance of prophylactic therapy for opportunistic infections.
Q: What are the major issues facing HIV researchers and policy makers today?
A: The major defining research issue is the development of a safe and effective preventative HIV vaccine. The major policy issue is the need to markedly scale up domestic and global preventive measures and to provide universal access to antiretroviral drugs.
Q: What is most important lesson you have learned over the 25 years that HIV researchers and policy leaders should keep in mind as we move forward?
A: Do not become complacent in the face of major research and public health advances. We are still in the middle of a catastrophic pandemic.
Q: Do you think that HIV has fundamentally changed the way that we think about and research infectious disease?
A: Yes, the lessons that we have learned from HIV/AIDS are that if you invest substantial research and public health resources and you recruit the best and the brightest to address a problem, you can accomplish an enormous amount. We have done it for AIDS, and we should apply the same principles to our approach to tuberculosis, malaria, and other diseases of major global health impact.
Q: What are some of the findings from HIV research that benefited research into other diseases?
A: The importance of targeted drug development and a great understanding of the complex mechanisms of the regulation of the human immune system.
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