Without Borders
Brothers Arash Alaei & Kamiar Alaei Advocate for Human Rights & HIV Prevention
by JoAnn Stevelos

Photographed Exclusively for A&U by JD Urban

The Alaei brothers started their medical careers following the advice of their father, a Professor of Persian Literature, to “not follow money, but to follow their community, because then you will benefit from a better environment.” So they were shocked when they were seized and detained in Tehran’s Evin prison. The brothers had returned to Iran after their medical and public health training in the U.S. to set up a needle exchange program to stop the transmission of HIV in their hometown, Kermanshah. Arash was arrested at a gas station and Kamiar was arrested at their shared apartment. They said, “It was harder on our families than ourselves; it was nearly three months before our families learned what had appended to us.” They were charged in a secret trial on December 31, 2008, for conspiracy to overthrow the Iranian government. Kamiar was imprisoned for two and half years, and Arash for three years and two months. The brothers’ arrest was part of growing trend at the time to crackdown on human rights activists in Iran.

These are quiet but hopeful days for the Iranian-born Alaei brothers, Arash and Kamiar. They spend their days advocating for human rights, HIV/AIDS prevention and treatment programs in the Middle East and Central Asia.

I met up with the Alaei brothers at a public library in our mutual city, Albany, New York. Arash and Kamiar were affable, unassuming, and as fluent in poetry, quoting Rumi, as they are in the language of their professions. Our conversation flowed from HIV prevention and treatment, to medicine, human rights and to the philosophical intentions they bring to their work.

Raised in Kermanshah, Iran, Arash and Kamiar witnessed the ramifications of the eight-year war between Iran and Iraq. One of these was an increase of intravenous drug use and the acquisition of HIV, even among high school friends and classmates. As young men they decided to enter medical school when authoritarianism emboldened government officials to deny that the AIDS epidemic affected Muslims. Arash said during the first years of the epidemic, the government insisted that “the Muslim community was good and that AIDS was a bad Western disease of the gay community. The government said Iran didn’t have this disease. They chose to ignore it.”

But the brothers, medical doctors and active members of their community, kept their eyes and hearts open. In their own city, they saw that HIV was spreading rampantly. They became concerned about the lack of acknowledgment of HIV/AIDS by their government and unnecessary deaths among young people due to ignorance. Then, as luck would have it, a professor who studied HIV/AIDS in Paris began to mentor them at their university in Iran. For two years Arash and Kamiar were able to focus on the study of HIV/AIDS with Dr. Davood Mansouri. They presented their work in 2002 at the International AIDS Conference in Barcelona and soon after they were awarded a fellowship form the Ford Foundation in 2003 to learn about HIV care at the NYS AIDS Institute. Later in 2004 Kamiar received a full scholarship to continue his education at Harvard School of Public Health and Arash continued his work in Iran.

The Alaei brothers have been recipients of many awards including the Heinz R. Pagels Human Rights of Scientists Award from the New York Academy of Science, the Jona-than Mann Award for Global Health and Human Rights by the Global Health Council, and the first award for leadership in Health and Human Rights by PAHO/WHO, and the Inaugural Elizabeth Taylor Award in Recognition of Efforts to Advocate for Human Rights in the field of HIV. Arash is currently a Senior Consultant to the National AIDS Program, Tajikistan Ministry of Health. Kamiar is currently Associate Dean for Global and Interdisciplinary Research, Clinical Associate Professor, Department of Health Policy, Management and Behavior, and the Director of Global Institute for Health and Human Rights at the University of Albany.

JoAnn Stevelos: New York, we have had considerably fewer new HIV/AIDs cases than other places. Why, and how does that compare to what is happening globally?
Arash Alaei: In New York, we have fantastic progress. In 2003 we learned many things about HIV research, policy, and practice. We are in the the middle of strong progress that has culminated in New York being on its way to zero new cases in 2018.
For many countries, it is a different story. The history of HIV programs started in 1980s. But many governments ignored the epidemic, and now they are twenty years behind in prevention and treatment. It has not been a financial or resource issue; if a country asks of help to work nonreducing HIV infections, the Global Fund will help them set up programs, etc. And the Middle East is very wealthy; they could have funded programs and research. It is the stigma, discrimination, and ignorance that has blocked many countries’ progress and increased the numbers of infected people. Now still after all these years, science is driving the progress, we have tests and medicine; it is the political and cultural issues that keep people sick without access to some of the very best drugs and practices.

What are the influences of polices on HIV-related health coutcomes?
Arash Alaei: In New York, there are fantastic research and resources, but there is a gap in how healthcare workers and service providers interpret the research and use it locally. To think about the drug [user] thirty years ago it was a huge stigma, but now the stigma is reduced. Can we do the same thing for sex workers?

The simple question I ask here in Albany: Can we have a medical van to distribute methadone in Albany? No, I am told—the city doesn’t allow it. Albany has a policy against using medical vans to distribute drugs. Why is that?

In Tajikistan and other countries, they will put the drugs in a van and take them to the people who need them. A very successful program that works to help stop the spread of HIV. We have opiate substitutions that save lives but we can’t get the politicians to pass a policy for a medical van to bring medicine to people who live too far away from a clinic.

You have worked all over the world, with people form all walks of life; how do you navigate the many cultures and context in which you work?
Arash Alaei: This is the beauty of medicine and health. Doctors want to reduce pain. Pain doesn’t have culture. Pain is pain in any culture. HIV does not have culture.

Kamiar Alaei: We use a patient-centered approach that promotes empathy. If we listen to our patients they will tell us what they need from us. Our core values of respect and empathy help break through stigma in many different cultures.

Arash Alaei: In some environments people live in an authoritarian culture, where they see the doctor as an authority figure and the doctors act as such. Take this pill, do this thing. Our approach is to share information with patients then come up with a solution with the client. We may share with a patient that during sex with people who have HIV/AIDS is one way you can become infected and using a condom could protect them. But that solution may not fit their culture. We need to be flexible, we have to ask them how they think they can protect themselves given the information we shared.

If you had a young person sitting here with us, what are the top three things you would share them how they can prevent getting HIV/AIDS?
Kamiar Alaei: This is a very hard question. As doctors we said we have to be good listeners. We can’t write one prescription for different patients. We need to change attitudes and behaviors so our approach is more personalized.

Arash Alaei: For me I think about three things, I want to say, be happy to reach your goal. When you reach your goal be happy. After you reach your goal be happy. What is the meaning of that: Many young people, they want to have sex. This is their goal. I say, okay, reach your goal but be happy. When you wish to have sex be happy. While you are having sex, be happy. After you have sex, be happy.

Sometimes people think they want to have sex without any idea to protect themselves from disease. When they reach their goal, afterward they are not happy. Three times they can be happy, when they wish for sex, while they have sex, and after they have sex; if they plan and protect themselves, they will have no worries.

Our younger generation is very smart. They can find information easier than any other generation. So for our healthcare workers, we don’t want to change their goal if they want to have sex; we want them to be happy to reach their goal in a safe and supportive environment.

Did being in prison affect how you conduct your work? And did it change the way you do your work now?

Kamiar Alaei: Prison did not change our goal because we do this work for our own hearts, not for any organization. When I was in prison, especially solitary confinement, I thought about how many lives we have saved, how many new babies were born healthy, how many wives we helped not get HIV from their husbands. We never regretted what we did. So when we were in prison, we continued our work. When we were released, we can’t continue our work in Iran, but we could on the border, in other countries, and in the USA.

If you are honest about your goal and your passion you will never be disappointed.

Arash Alaei: Prison can be many things, tomorrow it could be a contract with this university or this organization—prisons are places that restrict your goal, dampen your passion. Changes in environment happen. The message to me was—if you have this passion, and you believe you are in a good way to reach it, it doesn’t matter how this life goes up and down. It doesn’t matter if you are director of a big institute or in prison in a solitary cell. If people trust you to serve them that is more important than having a high position. I learned to not give up, be flexible, look for opportunity to fulfill my goal.

In prison it was a good opportunity for us to learn from prisoners. As healthcare workers, we provided basic care as best we could. We learned from the people we were in prison with, drug [users], homeless, everyone. We learn how to care for people in prisons. It doesn’t matter if you are in a fancy clinic or a prison and you can always support your community and benefit.

You were definitely in the field doing fieldwork!
Arash Alaei: Absolutely! We call it a practical PhD. Be in practice and learn from your community.

The work we do in public health can feel immensely sad sometimes, and as a doctor and public health practitioner, I imagine there are times when the work can feel overwhelming or sad? How do you find joy and how do you bring joy to your work?

Kamiar Alaei: The key to your question is whether I feel sympathy with or empathy with my patients. If I have sympathy I will feel a distance between me and my patient. and want to help them. If I have empathy, I am in the middle of the situation with them. I say, okay, if this happened to me, my family member, my friend, what would I expect others to do? This is the immediate reaction—empathy. I don’t think about whether it is joyful or not, it is what I have to do to fulfill my goal. When I see the outcome, when I can help change the lives, this is what gives me joy.

Arash Alaei: When you look at the face of your patient, that is the best gift. When a patient comes with questions and I can answer even some of them—I am happy. This is a gift, it is refreshing.

What are you worried about in your work? In the future of HIV/AIDS? In the U.S.? Are funders still funding and demonstrating a commitment to issues?
Kamiar Alaei: I am worried that sometimes good practices are influenced by some private sectors that have their own agenda.For example, pre-exposure prophylaxis (or PrEP) is when people at very high risk for HIV take HIV medicines daily to lower their chances of getting infected. Currently there is a huge movement advocating for everyone to take PrEP, including teenagers. Do we need to provide PrEP to this extent or do we need to provide more education and access to condoms? My opinion is that we have been educating for thirty to forty years about safe sex with much success. If we promote the PrEP intervention, it may help people feel confident they won’t get HIV, but PrEP won’t protect them from other sexually transmitted diseases.
Arash Alaei: I worry about something we have experienced directly that inhibits our work—the intersection of politics, change, science, and human beings. Under authoritative, conservative leaders the environment for science to help our communities changes. For example, in Iran, we had a successful methadone program 1970 to 2000, but, in 1979 the program ended after the Islamic Revolution. A reformist party leadership changed to a conservative president who was a more authoritative ruler. The conservative party closed down the program.

It is my worry for the U.S. that they are short-sighted. Health is global; it doesn’t have borders. We have to contribute resources to science and health programs to have global safety for all people. In the Middle East we don’t have issue for resources, [as we have] rich countries, but, because of politics, there is no priority for HIV services.

How do you like working together?
Kamiar Alaei: The good thing is that Arash and I are complementary, not identical in our skills. Arash is more creative, innovative, and I like to think about how to get his ideas started. We have the same values, even though we have different approaches.

Arash Alaei: Because we have a different approach it improves our skills. We are a team, we work very well, we challenge each other and increase the likelihood that we will have good outcomes. This is very important concept for the young generation to understand. Some young people think if they find a match they will go faster, they will reach their goal faster. Perhaps, but when they work with people who don’t match them, they get the opportunity to look at issues from angles.

There are so many issues going on in the world.What brings you hope? How do you get up every day?
Arash Alaei: When I wake up I want to see a message from key people like policy makers or decision makers that they see people living with HIV the same as they see themselves. And that we all have the same goals: to be healthy and happy.

Kamiar Alaei: The hope for me is when you have the opportunity to see people in disadvantageous situations, you appreciate what you have, physically, financially, emotionally, and philosophically. My hope is that each day when I wake up I understand I could be that person, but instead I am are here and I have the opportunity to help that people living with a HIV/AIDS.

Arash Alaei: Rumi said “Maybe your language is Turkish and mine is Farsi; we can’t communicate with one another with words, but we can a have common heart.” Rumi [also]has a poem that says, “Even if you are very far from me, your heart is close to me. But, if you are very close to me and your heart is far away, you are far away.” Hope is to have common heart, common vision, without judgment, and to help each other.

For more information about the Institute for International Health and Education, log on to: https://iiheus.org/.

For more information about the photographer, log on to: www.jdurban.photography.

JoAnn Stevelos, MS, MPH, has over twenty years experience in leadership roles such as directing the New York State Center for Best Practices to Prevent Childhood Obesity, evaluating the Alliance for a Healthier Generation’s children’s health programs, and for the First Lady of the United States Let’s Move program. She is currently a public health consultant for several children’s wellness programs. Visit her online at: www.joannstevelos.com.