CDC's TB policy forces American family to obtain medical care in Italy for adopted Ethiopian child

The CDC's TB policy for internationally adopted children has forced
Tsehaynesh and her family to temporarily move to Italy, instead of
coming home to the U.S from Ethiopia, to obtain medical care.*

As media coverage has increased awareness of the discriminatory nature of the CDC's TB policy for internationally adopted children, more American families like the Scruggs and Crombie families are coming forward to tell their stories of how they have been affected by the implementation of the Centers for Disease Control and Prevention 2007 Technical Instructions for Tuberculosis Screening and Treatment for Panel Physicians. One such family recently contacted the Examiner from Italy to increase awareness of their current situation.

Luca Rigotti and Marily Nixon live in Chapel Hill, North Carolina, where he is a professor at Duke University's Fuqua School of Business and she is a practicing attorney. On July 25, the couple traveled to Ethiopia to pick-up their 4 year-old adopted daughter, Tsehaynesh, and bring her home to the U.S. They expected to spend two weeks in Ethiopia. Instead, they have been barred from the United States for more than six weeks, and unless the U.S. government relents, they will not be able to come home for at least five to seven additional weeks because of the CDC's TB policy.

To provide all of the details pertaining to her family's story, Marily Nixon agreed to answer interview questions via email. The following is Part 1 of this interview.

Part 1 -

Q: In what ways did you prepare for your adoption and to bring your new daughter home to the United States?

A: We have been involved in the Ethiopia adoption process a total of nearly two years. We received our "referral" of Tsehaynesh (her name means "You are Sun") as a potential adoptive child in February of this year. Our adoption agency, a large, ethical, and well respected agency that handles many adoptions from Ethiopia, provided basic medical information about her at that time. At our local physician's advice, we requested some additional medical tests at our expense, including testing for tuberculosis. While the agency agreed to conduct some of these tests, it refused to conduct tuberculosis testing, stating that tuberculosis testing is not done on Ethiopian children proposed for adoption. At this point, there was no requirement by the US government to test Ethiopian children for tuberculosis, and since the agency had refused our request, we felt we had no choice but to continue with the adoption without the additional testing. We also trusted the agency knew what tests were appropriate and possible to conduct on potential adoptive children from Ethiopia.

In the meantime, my husband and I set up a room for Tsehaynesh in our home, bought clothes for her, and enrolled her in a local preschool program with experience with children for whom English is a second language.

Q: So, was Tsehaynesh tested for TB when the CBC TB policy went into effect for Ethiopia in April of this year?

A: No, the U.S. government decided not to test children for tuberculosis until the very last days of the adoption process -- not until the children had been through the entire legal adoption process and had received their Ethiopian passport (the children travel as non-US citizens on an Ethiopian passport with a special visa and it is up to the adoptive parents to obtain a US passport once they are home). We again requested tuberculosis testing of Tsehaynesh -- at this time, we requested the American consulate in Ethiopia simply expedite her tuberculosis testing, so that we would not end up with uncertainty and potential problems at the end of the process. We also arranged for our congressional representatives to support our request with the US Consulate in Addis Ababa, Ethiopia. However, in a form e-mail to us, the US Consulate denied our request. Meanwhile, our adoption case proceeded, and after a series of delays, we were finally made the legal parents of Tsehaynesh on June 30 of this year.

Q: When was your daughter finally tested for TB then?

A: The week we were to travel, the agency informed us Tsehaynesh had a positive skin test for TB, which we were told is fairly common for older adopted children in Ethiopia. However, the agency also told us that they were not aware of any adoptive child in Ethiopia ultimately showing a positive chest x-ray for tuberculosis, which was the next step. We traveled to Ethiopia on Saturday, and the following Monday, we learned her chest x-ray was deemed "suspicious", and under the new CDC protocol a sputum culture would need to be done. It takes a minimum of eight weeks (some sources say 8-10 weeks) to receive results from this culture. At the time the culture was taken, and still today, she has never shown ANY signs of active tuberculosis.

Q: What did the U.S. government recommend that you do while waiting this minimum of 8-10 weeks for the results of the cultures?

A: the US government's approach was simply to leave Tsehaynesh in Ethiopia for a minimum of eight weeks. When we asked if treatment should be started based on her "suspicious" chest x-ray, we were told that, under the CDC protocol, the doctors in Ethiopia would not start any treatment. Plus, the CDC protocol does not provide for any additional, more sophisticated testing to confirm her tuberculosis status. So the US government put us in a double bind: it claimed that Tsehaynesh was sick and couldn't come back to United States, while at the same time it claimed that she was not sick enough to get adequate assessment and treatment.

Our US pediatrician, however, in consultation with Duke pediatric infectious disease doctors, advised starting treatment based on the "suspicious" chest x-ray. If Tsehaynesh would be required to stay in Ethiopia for at least 8 more weeks, during which time any tuberculosis exposure she might have had could develop into active tuberculosis, we felt we had a responsibility to our child to find a way to meet her medical needs. Luckily, my husband, Luca, still has Italian citizenship, so we had a potential option that most adoptive parents will not have: After many phone calls, e-mails and meetings with the adoption agency, the American consulate in Ethiopia, and the Italian consulate in Ethiopia, and with lots of help from Italian relatives, we were able to arrange to travel to Milan, Italy with Tsehaynesh for full health analysis and, potentially, for treatment. (Because we are not Italian residents, all the medical costs we incur are out of pocket, and we expect them to amount to several thousand dollars at least.)

The Italian media has been very interested in our case. The major Italian newspaper, Corriera della Sera, ran a front-page article about our plight, and many other news outlets, print as well as TV, interviewed us and ran their own stories. The stories are sympathetic, and convey the Italians' disbelief at the unnecessarily harsh policy of the US government, which forced us to take months out of our lives and move temporarily to another country to provide our child adequate medical care.

This interview to be continued in Part 2

*****PLEASE ALSO READ THIS ARTICLE FOR EXPERT INFORMATION ON PEDIATRIC TUBERCULOSIS: Interview with pediatric tuberculosis expert Dr. Jeffrey Starke******

To take action against the CDC's TB policy for internationally adopted children:

Sign the Build Families, Not Barriers Petition
contact members of congress to ask them to take action to exempt this population of adoptees from the policy.

*photos courtesy of Marily Nixon

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