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Remove insurance limits for sickle cell, provide life-savings drugs: disease warriors

Sickle cell warriors

Sickle Cell Disease (SCD) warriors and advocates in Kisumu want the government to compel health service insurers to lift the discriminatory insurance limits hindering the management of the disease.

Photo credit: Angeline Ochieng | Nation Media Group

Sickle Cell Disease (SCD) warriors and advocates in Kisumu want the government to compel health service insurers to lift discriminatory insurance limits hindering the management of the disease.

They lamented over inadequate drugs at the main medical facility - Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) – noting that sub-county health facilities are the worst-hit as they have never receive a single supply of the commodity.

The warriors also want the government to come to their rescue with regards to health insurers who have completely excluded the blood disorder.

Ms Veronica Bitta, the founder of Tumaini Sickle Cell Organization, said that the discriminatory and exclusion limit has greatly affected patients who are in constant need of medical attention.

“Most insurance companies that cover health treat the disease as a complete exclusion and do not undertake the cost, the few that do have put caps making the blood disorder more expensive to the patients,” she said.

Ms Bitta said they are currently engaging the Senate and county assembly champions to create legislation to help realise the goal.

Sickle cell warriors

Veronica Bitta (centre), the founder of Tumaini Sickle Cell Organisation, leads advocacy groups and sickle cell warriors during a briefing in Kisumu on September 22, 2023.

Photo credit: Angeline Ochieng | Nation Media Group

She said the aim of the move is to ensure the SCD patients can fully use their various health covers while seeking treatment across the country.

“We have cases of families that have subscribed for an inpatient cover limit of five million but when one of the dependents is a sickle cell patient, [the] insurance company will only undertake [to pay] up to a maximum of 300,000 despite the cover limit,” said Ms Bitta.

She spoke in Kisumu on Friday during a sickle cell awareness campaign to mark its awareness month.

The warriors also decried frequent stock-outs of the sickle cell essential drugs at public facilities, which has left a number of patients digging deep into their pockets in search of the medicine.

According to Ms Bitta, Hydroxyurea, an essential drug used to reduce the frequency of SCD crises and the need for blood transfusion, is often missing from the shelves of public facilities.

She also said that the drugs are rarely available at JOOTRH while the sub-county health facilities never have the medicines.

Ms Sharon Jescah, an SCD champion, said that the drugs are also sold at a high cost in public health facilities with a full dose going for up to Sh4,000.

“Sometimes we may visit the facility and find the drugs but on most occasions, they are always missing.

“SCD is difficult and expensive to manage because these are people characterised with low immunity, frequent infections and are supposed to be on lifelong medication, which should be readily available,” said Ms Jescah.

Apart from Kisumu County, Homa Bay and Siaya counties have also been affected by the irregular supply of h life-saving dugs.

During an interview late last month, the Health Principal Secretary Mary Muthoni said that the drug shortage would be addressed soon.

She further stated that the role of ensuring drug availability is purely the role of counties as the health sector is devolved.