Sumayah comes from a very poor family of gypsies. Sumayah and her family are marginalized and rejected by the general population because of their affiliation with the gypsy community. Members of the gypsy community are even mistreated by health care workers, and as a result often do not seek out health care or other services. Still, in June 2012, Sumayah was so ill and severely malnourished, weighing only 14 kilograms (31 pounds), that her family brought her to a hospital.
Three months later, in September 2012, Sumayah was diagnosed with HIV and TB and started on treatment for both. Sumayah’s TB and HIV doctors struggled to coordinate her care. In Tajikistan treatment for TB in children is centralized and only given at one hospital. Transport support is not provided for patients or their families. As a result patients often stay at the hospital for several months, and only patients whose families have the financial means to travel to the hospital receive visitors.
While receiving treatment at the hospital, both Sumayah and her family were treated poorly by the hospital staff and other patients. While she was still undergoing treatment for TB, Sumayah’s family removed her from the hospital and brought her home.
In November 2012 a sputum specimen taken from Sumayah was submitted for culture and drug-susceptibility testing. The test determined that Sumayah’s strain of TB was resistant to isoniazid, rifampicin, pyrazinamide, and streptomycin. Sumayah was diagnosed with MDR-TB. Sumayah’s doctors worked hard to convince her and her family to return to the hospital where they were treated poorly and made uncomfortable by the staff and other patients. They agreed. Sumayah was the first patient ever treated for MDR-TB in the pediatric TB hospital in Tajikistan. Once initiated on MDR-TB treatment at the hospital, Sumayah’s family demanded that she receive home-based care.
The community nurse and DOT (directly observed therapy) worker refuses to provide treatment for Sumayah. The hospital reimburses a local doctor’s travel costs for visiting Sumayah daily, but the only person who can convince Sumayah to take her medications is her great-grandfather. Since initiating treatment for MDR-TB, Sumayah’s condition has slightly improved.
Sumayah’s story highlights the need for support such as travel stipends or housing support for the families of children undergoing treatment at facilities far from their homes. It also highlights the need to reduce stigma and expand MDR-TB treatment access for all patients, regardless of class or ethnicity.