Foundation seeks to treat blinding disease linked to HIV/AIDS

Seva Foundation is looking at different ways of treating CMV retinitis in developing nations.

  • Ocular Surgery News U.S. Edition, August 25, 2008
    Erin L. Boyle
John A. Hovanesian, MD
John A. Hovanesian

Before antiretroviral drug therapy was introduced in the West, blindness caused by opportunistic infections linked to HIV/AIDS was one of the worst complications of the disease, according to one physician.

David Heiden, MD, who helped treat HIV/AIDS patients during the 1980s and ’90s in San Francisco, said he saw first-hand the fear that potential blindness from cytomegalovirus retinitis (CMV retinitis) caused.

“Blindness was part of the AIDS story. Up to a third of the people got CMV retinitis,” he said in a telephone interview with Ocular Surgery News. “It was a big part of our business as ophthalmologists, and we got good at [treating] it. Then, when AIDS drugs came along, there was little need for those skills here.”

However, those skills are now needed in developing countries, where the number of HIV and AIDS cases remains high, and antiretroviral drugs are not as widely available, Dr. Heiden said.

Ophthalmic Outreach

To eradicate CMV retinitis, Seva Foundation’s AIDS Eye Initiative trains local AIDS physicians to detect and treat the disease, Dr. Heiden said. The initiative focuses on addressing the ocular needs of AIDS patients in Southeast Asia, in conjunction with the medical outreach organization Doctors Without Borders.

Dr. Heiden, who helped found the initiative with Seva Foundation, said estimates have placed the rate of CMV retinitis at 5% to 25% of all HIV-infected cases in developing nations. In Thailand, CMV retinitis is reported to be the second most common opportunistic infection to affect people who have started antiviral treatments.

Such statistics encouraged Dr. Heiden to publish a study with colleagues on the treatment of CMV retinitis in developing countries, naming CMV retinitis the “neglected disease” of the AIDS pandemic.

He also looked into establishing a program with Seva Foundation to address treating it.

“I felt that there was a huge gap in patient care, and that I needed to develop some sort of institutional collaboration and supportive base to pursue this work. So over the first 2 to 3 years, while I had support from my department and Pacific Vision Foundation and encouragement from the Clinton Foundation, I was in dialogue with Seva Foundation and particularly Suzanne Gilbert. Now the AIDS Eye Initiative isone of Seva’s programs. And all the resources of Seva are trying to help get this going,” Dr. Heiden said.

About SEVA Foundation

A woman with AIDS and CMV retinitis was blind in the right eye and had a sight-threatening infection in the left eye
Southeast Asia, November 2006. A woman with AIDS and CMV retinitis was blind in the right eye and had a sight-threatening infection in the left eye. By November 2007, she had received five ganciclovir injections into the left eye by an AIDS physician and her sight had been saved.
Image: Heiden D

“Seva Foundation’s mission has always been to bring better health and new opportunity to the world’s most vulnerable populations — the poor, women and children, and those living in remote rural areas,” said Chundak Tenzing, MD, sight program director at the foundation. “Our work is based on the idea of partnership. We always aim to build genuine collaboration with people in the communities we serve. So rather than sending outsiders to operate the eye care programs, we partner with local people to develop their capacity to provide care to their own communities.”

During its 30 years of service, Seva Foundation has helped nearly 3 million blind people to see again by working with communities to establish cataract surgery clinics in Asia and Africa. Last year, Seva supported programs that served more than 500,000 people worldwide. In addition to supporting partners in developing eye care services in clinical settings, Seva uses mobile eye camps and community outreach services so people in remote rural areas can access the care they need.

To ensure sustainability of these emerging programs, Seva encourages partners to adopt a fee structure in which patients who can afford to pay are charged for medical services, while those who cannot receive free or subsidized care.

Dr. Tenzing said the new AIDS Eye Initiative is a logical extension of Seva’s Sight Program.

“This is a good exmple of how Seva works as a catalyst to bring together a network of partners that can deliver ocular care to those in need,” he said. “What we will do is create a replicable model for managing CMV retinitis at the primary level by making it easy for primary care doctors to examine and diagnose the eyes of their AIDS patients. We will also work to find ways to lower the cost of drug treatments. It’s a huge undertaking, but we have the expertise and the network of partners that can do the job.”

CMV treatment

Dr. Heiden said one of the ways to approach CMV retinitis treatment in developing nations is to reassess who delivers care. It is crucial that the management of CMV retinitis is handled at the primary care level by an AIDS physician when all of the other opportunistic infections are treated.

Having primary care physicians treat CMV retinitis makes sense because there are often not enough ophthalmologists in developing countries to meet the overwhelming need for basic ophthalmic care, he said. Also, ocular problems in developing countries are primarily lens- or cornea- related, such as cataract and trachoma. Often, ophthalmologists in developing countries are unfamiliar with retinal prob- lems such as CMV retinitis.

By entrusting the care of CMV retinitis to primary care physicians instead of ophthalmologists, more patients in rural and impoverished areas might receive treatment and management of the disease, Dr. Heiden said.

CMV retinitis is one of several opportunistic infections that require a great deal of time to diagnose and treat, he said. A simple eye exam with an indirect ophthalmoscope by the primary care physician might help HIV/AIDS patients receive a faster and more efficient diagnosis and treatment.

He said valganciclovir, an effective treatment in simple pill form, should also be made easily available and affordable to all HIV/AIDS patients.

CMV awareness

Dr. Heiden said CMV retinitis has not received much attention from the ophthalmic community and important blindness initiatives.

He said patients who have CMV often do not get the treatment they need because they are too ill or too poor to seek care.

“In developing countries, it’s a particularly heartbreaking complication. I think we can manage CMV retinitis in resource-poor settings at 70% or 80% as good an outcome as we could in San Francisco. In my mind, it’s compelling that we do it.”

For more information:

  • David Heiden, MD, can be reached at 2100 Webster St., Suite 214, San Francisco, CA 94115; e-mail: dheidenpea@yahoo.com.
  • Chundak Tenzing, MD, can be reached at Seva Foundation, 1786 Fifth St., Berkeley, CA 94710; 510-845-7382; e-mail: ctenzing@seva.org.

Reference:

  • Heiden D, Ford N, et al. Cytomegalovirus retinitis: The neglected disease of the AIDS pandemic. PLoS Med. 2007;4:e334.
  • Erin L. Boyle is an OSN Staff Writer who covers all aspects of ophthalmology.

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