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The Sulacks weighed their options: Have a transplant with a match that was less than ideal – far less – or wait for gene therapy to become available. The news release didn’t say anything else about the SCID gene therapy. Or was the company abandoning its plans for SCID gene therapy altogether? In February, 2021, the parents of more than 20 children who were waiting for the gene therapy treatment, including the Sulacks, wrote a letter to Gaspar. Insurance companies have sometimes balked at paying for gene therapy, which is typically given in one treatment.
“A lot of times, the funding streams have names that say ‘community,’ ‘community-based organizations’ or ‘community health workers,’ but the funding often goes to states and doesn’t end up helping at a grass-roots level,” said Denise Smith, executive director of the National Association of Community Health Workers. “HRSA strongly values the critical role that community health workers play – and can increasingly play – in supporting the health and well-being of communities. “Community health workers are frontline public health workers who are trusted members of the community they serve. The group’s promotores de salud, or community health workers, encouraged vaccination and set up a hotline to distribute accurate information about the virus. “Grantees will be able to hire community health workers, as needed and appropriate,” said Nordlund, the CDC spokesperson.
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