Hemophilia of Georgia tells lawmakers telehealth, 340B pharmacy and gene therapy are key to keeping patients in care

Michelle Condie, senior director of advocacy for Hemophilia of Georgia, told a House Health Committee the nonprofit supports about 2,000 diagnosed patients in Georgia and urged lawmakers to protect telehealth flexibilities and the 340B program that subsidizes treatment.

Condie said roughly 33,000 people nationally have hemophilia and that HOG’s nonprofit pharmacy, administered under the 340B program, helps reduce treatment costs for its patients. “Our patients' cost of treatment and care annually, it's between 300 and 500,000, and that's for a good year,” Condie said, adding that severe cases can exceed $1,000,000 and that HOG has seen hospital bills reach millions of dollars.

The presentation explained that bleeding disorders such as hemophilia affect clotting-factor production and are usually X‑linked, which makes them more common in males. Condie described programmatic supports HOG provides: a client assistance program for insured patients, an insurance premium assistance (IPAP) program for uninsured patients, and a patient emergency assistance fund. Condie said the Georgia Department of Public Health provides a $400,000 annual grant used for short-term premium and deductible assistance for patients, but she cautioned those funds can be exhausted quickly.

Condie described HOG’s hybrid telehealth sites and hemophilia treatment center partnerships — including Emory’s Hemophilia Georgia Center for Bleeding and Clotting Disorders, Augusta University centers, and the Willett Children’s Hemophilia Treatment Center in Savannah — and credited telehealth flexibilities extended during the pandemic with allowing HOG to reopen access in under‑served parts of the state. “We opened our hybrid clinic in Savannah in 2021. That brought back over 200 patients just within the first two years who had not been seen,” Condie said.

She urged lawmakers to support making telehealth flexibilities permanent so the hybrid clinics are not later rescinded, noting HOG has bipartisan support for that change and is preparing materials to send to federal policymakers. Condie also listed HOG’s policy priorities as protecting the 340B program, securing telehealth and broadband, expanding mental‑health supports and advancing access to gene therapy for people with bleeding disorders.

The committee asked technical questions about newborn screening and Medicaid eligibility. Condie said severe and moderate hemophilia is often identified in the newborn period, that some patients are Medicaid‑eligible but many have private insurance HOG helps enroll, and that diagnosis of related conditions such as von Willebrand disease is undercounted in women. The presentation closed with Condie describing an advisory board that files an annual report to the governor’s office on insurance and care recommendations.

The committee thanked Condie for the presentation and moved on to scheduled bills.