The Story of New Day, Living with HIV for 32 years
By: Dr. Maruf Hasan
It was the hottest day of summer Europe ever experienced in last 40 years and I was eagerly waiting to meet Mr. Haerry David from Geneva, Switzerland, co-author for www.hivrestrictions.org at RAI Amsterdam, Netherlands. He is working for those who are living with HIV for many years as a freelance and volunteer. We were there to talk about decriminalization and restrictions on people living with HIV in many countries. The website resourced with so many information on this issue (www.hivrestrictions.org) keeping data on the visit and work permit restriction with deportation related to HIV & AIDS. Surprisingly I found Pakistan & Bangladesh beside Saudi Arabia, China, Malaysia, UAE who deports HIV infected people as soon as they are detected during their stay and restriction on any kind of visit for those who are already detected.
Threshold for my surprise exceeded when I came to know that, Mr Haerry David himself is living with HIV & AIDS for last 32 years. He is the highest number of year survivor living with HIV, doing everything like everyone, ever encountered by me in my lifetime. It is evidential that many of the HIV positive patients are living more than 35 years, with proper treatment with antiretroviral therapy. A HIV patient may live not more than 05-10 years without treatment. This became possible due to advancement of antiretroviral therapy these days. So I decided to share David’s story in his own words to everyone, to know more about AIDS & HIV with braking barrier and building bridges.
Chapter One: HIV inside my body
It was a wonderful evening I remember. The gentle breeze, silence of the nature and everything was so beautiful. The weekend of 1986 in France was amazing but after coming back I wanted to go to the hospital. I knew that there was risk but I had sex with a man, for the first time really. I waited for six months to make up mind to know if I am infected or not, even though I had no symptoms after the memorable French weekend. But I just had a feeling that I want to. Finally I could make up my mind and went to hospital. The result was positive.
I was diagnosed as HIV infected in 1986, when we had highest number of new infection in my country, Switzerland. I was among 3600 patients being detected that year. This result could not give me a shock, because I was fully prepared that the test result would come positive. Being free from any kind of symptoms at that moment I just wanted to know about my situation and I met the physician. “Two to three years, may be more, may be less”, she replied when I asked my physician when I asked her about my life expectancy. Her answer was funny to me and laughed saying, “Actually you don’t know and that’s the reason I don’t believe you”. Then we did some follow up tests and they wanted to give me daily dose of 1800 milligrams of azidothymidine (AZT), is an antiretroviral medication used to prevent and treat HIV/AIDS. I don’t know but I had feelings that those medications will make me sicker as I was not having any symptoms back then. I read about those antiretroviral therapies having bad side effects. I was very blunt, I said I think I better take care of myself & walked away from the premises.
Chapter Two: About to loose
For the next ten years till 1996 actually I did nothing. I never thought of going back to the hospital; I never did any blood test, nothing. I focused on my career and I had a career, a professional career, until I fell very sick in ’96. I was really, really, really sick. I experienced loosing 30 kilo of my bodyweight on a sudden. My skin were having Kaposi sarcoma (a cancer that causes Purplish patches of abnormal tissue to grow under the skin, in the lining of the mouth, nose, and throat, in lymph nodes, or in other organs). I was diagnosed with atypical tuberculosis after lung infection for three times in a month. It was a very rough time for me. I was losing hope. Somehow I got lucky that in 1996 specific treatment for HIV arrived. I start the treatment and it worked really well. Although after receiving the first treatment regime, it was complicated and toxicity of the drug caused lot of side effects and difficulties for me. I managed my way and today I have an unusual regimen but it is very well tolerated. My treatment had three regime consisting Integrase inhibitors, Nevirapine & Abacavir.
Chapter Three: Metamorphosis
I informed my family back then right away because I thought that was important if something would happen to me, I couldn’t know. I was just sure that I wouldn’t die in the next two months. What more, I did not know. So I informed my family. They were shocked; of course they were supposed to be. I informed all my friends and they were very supportive. But let me tell you something. My mother is still worried today; she was worried even before I was diagnosed. Thirty years later she is still worried, but that’s a mother.
I should tell you that I am gay and I am married since five years. My partner is not positive, and he is not afraid at all. In Switzerland we know for ten years that people under treatment are not infectious. Although it’s the specialists and the physicians who know about this important thing, not the people on the streets. But it is starting to be accepted, or be known. Because the safest sex you can have with HIV positive person who has been treated, because nothing can happen. But still it is better to use protection like condoms when you are having sex with your partners when both of you are free from disease.
Chapter Four: The new beginning
I was exporter for a Swiss company. After my diagnosis as positive, I worked for 10 years like a normal person. But I had to quit my work because I was so sick. In 1996, and I go to pension after that and then slowly I started doing additional work. How I decided to work for those people suffering from HIV infection and AIDS, that’s perhaps the story. I did this job while I already had HIV and at the time we had an entry ban to the United States and I had to go to the US twice each year as a exporter for the Swiss company in the ‘90s. And in theory I was not allowed to go there, so I was always nervous. Especially later, when I had treatment, I was even more nervous because I had my treatment in my luggage. I started repacking my treatment as vitamins and I had a good excuse why I was taking so many vitamins in case the customs official would asked me and I would deny any HIV. I would perhaps say I have cancer, or I have something like that. And in the ‘90s, when I couldn’t work anymore, I said to friends of mine that we should establish a database of the countries where we are not allowed to travel to. Because people are righteous to know, and that’s when it started.
So far we have touched few land marks. In 2008 UNAIDS established a task team on this issue and issued recommendations and then started working with several governments on repealing restrictions and the most prominent government that repealed the restrictions was USA. Another country that just repealed restriction is Taiwan, also South Korea repealed restrictions and Singapore at least eased its restrictions. So that’s the outcome of the task team convened by UNAIDS and we are still working on that. With IIS and UNAIDS we are lobbying governments to stop this because it makes no sense. We are working on additional countries with ban at the moment, especially on, Middle East (Emirates, Saudi, Arabian countries), China and Russia.
Chapter Five: Every sun rise is hope
My treatment regime that I have for last ten years is doing a fantastic job. I would say the first ten years of my treatment that is until 2004, was bumpy because of the side effects. In 2004 I switched to Ribavirin (an anti HIV drug also used for the treatment for Hepatitis C) and I had less gastro-intestinal side effects but I had side effects on my central nervous system. I was borderline depressive, for many years. That was very irritable and in 2008 I switched to my current regimen and all is gone and my immune system is even better. So today when you look at my parameters everything is normal.
We believe the person with or without HIV should have access to the health system in the country he lives like anybody else who has any kind of health issue. If you have diabetes and you go abroad, you are treated abroad. If you get cancer, you are treated in the country where you are. So people with HIV should be treated the same. Today I have different projects with different organizations mostly for the betterment of the people living with HIV all around the world as a freelancer. I am aimed to eliminate the disease and cure the rest. As the world is fighting against HIV and striving to eliminate HIV by the year 2030 but I don’t have such target, though I just want to be around when it’s gone. And I believe, I have good chances to be around.