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Hemophilia of Georgia urges protections for 340B support and permanent telehealth flexibilities
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Summary
Hemophilia of Georgia told the House Health Committee it serves about 2,000 diagnosed patients in Georgia, outlined high annual treatment costs, and urged lawmakers to protect 340B pharmacy revenue and permanent telehealth rules that sustain hybrid clinics for rural patients.
Michelle Condie, senior director of advocacy for Hemophilia of Georgia, told the House Health Committee that the nonprofit supports roughly 2,000 diagnosed patients in Georgia and provides pharmacy, insurance and emergency assistance to help cover very high treatment costs. “Our patients’ cost of treatment and care annually is between $300,000 and $500,000,” Condie said, adding that a severe year can exceed $1,000,000 and some patients have faced multi‑million‑dollar hospital bills.
Condie described HOG’s role as a 340B covered entity that uses discounted‑pharmacy revenue to offset deductibles, copayments and travel for clinic visits. She outlined three HOG programs: a client assistance program for insured patients, an insurance premium assistance program for uninsured patients, and a patient emergency assistance fund that covers urgent needs including lodging and dental care. Condie said the Department of Public Health provides a discrete $400,000 annual grant that HOG administers for short-term premium and cost assistance.
The group also described a hybrid telehealth clinic started in Savannah in 2021 that, Condie said, reconnected more than 200 patients who previously had not seen a hematologist. She urged lawmakers to help secure telehealth flexibilities adopted during the COVID-19 pandemic, saying those flexibilities created the opportunity to open and sustain remote and hybrid clinics for patients who otherwise must travel great distances for comprehensive care.
Committee members asked about newborn screening, Medicaid eligibility and whether HOG clinics are federally funded. Condie said severe and moderate bleeding disorders are typically identified in the newborn period, that some patients are Medicaid‑eligible but many rely on private insurance supported by HOG’s enrollment work, and that the telehealth sites are funded by HOG rather than directly by a federal grant. She said HOG is working with federal partners and has bipartisan support for making telehealth rules permanent.
Condie also highlighted other HOG priorities: protecting the 340B program, access to mental‑health services, coverage of gene‑therapy options as they mature, and care for an aging cohort of people with bleeding disorders. She described outreach to dentists and hospitals to raise provider awareness and reduce delays in diagnosis, and she noted HOG’s role as the regional core center for a multi‑state Southeast Hemophilia Network.
The committee thanked HOG for the presentation and moved to the next agenda items.
