Lacy MacAuley

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a home for my pen, projects, and passions

Jakelin Sosa, a woman whose story needs to be told

I think policy is fascinating. But there are times when you have to take policy to a human level. You have to start talking about what the policy actually does. That’s why I wrote the piece below for the Center for Policy Analysis on Trade and Health (CPATH). My piece here was posted verbatim on the website for Latino USA, way-too-early-on-a-Saturday-morning NPR program for Latino-Americans.

Why can’t sick Guatemalans get lifesaving treatments they need?

“No hay dinero,” states Jakelin Johana Cucyan Sosa, a Guatemalan woman living with HIV, “There is no money.” There is no money for hospitals or for patients like her.

A crisis has been deepening for sick Guatemalans since the US- Central American Free Trade Agreement (CAFTA) pushed the cost of medicine in their country out of their reach. A new report by the Center for Policy Analysis on Trade and Health (CPATH) documents just how prices have changed, and why.

The personal story behind the policy statement is what gives the policy discussion its blood and its life. I was fortunate to be able to tell the story of Jakelin Sosa.

Diagnosed with HIV in 2003 when she sought treatment for a cold that would not go away, Sosa was referred to a clinic that provided her with a regimen of antibiotics to fight opportunistic infections. She then began visiting Hogar Marco Antonio, where donations from the NGO Doctors Without Borders made it possible for the clinic to provide antiviral medication. In addition to managing her own illness, Sosa is a caregiver for her husband, who is also HIV positive. Her husband is receiving antiviral drugs through IGSS, a government agency, because he is retired with a disability. He is bedridden and often deals with bedsores which complicate his care. Sosa also cares for their two daughters, Frida, 11, and Sabrina, seven.

Sosa is now nearly blind due to a toxoplasmosis parasitic infection, a common infection that has severe consequences only in people with HIV, AIDS, or with a compromised immune system. She can no longer see her daughters growing older, but she wants to remain alive to care for them and see that they reach adulthood.

Treatment through Hogar Marco Antonio is free for patients, so Sosa’s care is not dependent on ability to pay for medicine. However, when the cost of medicine rose dramatically due to CAFTA, her clinic had to make tough decisions about what they could do and couldn’t afford to do for their patients.

Sosa’s clinic eliminated lab work altogether, and decreased the amount of medicine that was doled out to each patient in their care. In addition, people with expensive drug regimens are now forced to find a way to get to the clinic every eight days to pick up their medication.

As a result of her poor eyesight and the need to care for her husband and two daughters, Sosa has had trouble finding work. She struggles to be able to afford to travel to the clinic every eight days. She has moved her family in with her mother and sister, who help with the children and caring for Sosa’s husband…

Sosa can only hope that the Guatemalan government and its trading partners make basic decisions to make her treatments more affordable. She is a member of Mujeres Positiva, an organization for women working with hospitals to provide medicines, and working to encourage the government to increase funding for hospitals and clinics. But the provisions of CAFTA are pushing cost of generics to the top shelf. Until drugs become more affordable, there is only so much that they can do.

For more information on how CAFTA’s intellectual property provisions have caused an increase in the cost of medicines for people like Jakelin Johana Cucyan Sosa, please see the peer-reviewed CPATH report in Health Affairs journal.

Stories like Jakelin Sosa’s are the ones that need to be told if we are ever going to build a better world.

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Filed under: activism, global justice, international relations, media

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