Cure HHT at ASH 2025
Welcome to Cure HHT’s resource hub for hematology professionals.
Here you’ll find key publications, clinical tools, and policy updates advancing the understanding, diagnosis, and management of hereditary hemorrhagic telangiectasia (HHT).
Together, we’re working to ensure every patient is accurately diagnosed and effectively treated.
RESOURCES
Bevacizumab (Avastin) Policy
This Cure HHT policy statement supports the use of intravenous bevacizumab (Avastin) as an effective and evidence-based treatment for patients with hereditary hemorrhagic telangiectasia (HHT) experiencing severe nosebleeds, gastrointestinal bleeding, chronic anemia, or high-output cardiac failure. It concludes that systemic bevacizumab significantly improves outcomes with few side effects and should be covered by insurance for these clinical indications.
Iron Replacement Policy
This Cure HHT policy statement provides guidance on managing iron deficiency in people with HHT, emphasizing regular monitoring and maintenance of adequate iron levels. It recommends intravenous iron therapy over oral supplementation, cautions against using ferric carboxymaltose (FCM) due to its high risk of hypophosphatemia and potential bone complications, and urges individualized treatment plans to sustain iron repletion safely and effectively.
Warning about Ferric Carboxymaltose (FCM)
This Cure HHT announcement explains that the FDA has updated the safety label for Injectafer® (ferric carboxymaltose) to include HHT as a risk factor for symptomatic hypophosphatemia—a serious, potentially life-threatening drop in phosphate levels that can cause bone and muscle damage. HHT patients are advised to avoid Injectafer when possible, consult their HHT care providers, and consider alternative iron infusions such as Venofer, Iron Dextran, Ferumoxytol, or Ferric Derisomaltose, which carry significantly lower risk.
International Guidelines for Management of Anemia and Anti-Coagulation in HHT
The 2020 Second International HHT Guidelines outline that anemia—affecting about half of all HHT patients—stems primarily from chronic bleeding due to nosebleeds and gastrointestinal telangiectases. The guidelines recommend routine testing for iron deficiency in all adults, prompt iron replacement (preferably intravenous when oral therapy is ineffective or poorly tolerated), red blood cell transfusions when needed, evaluation for other anemia causes if unresponsive to treatment, and careful individualized use of anticoagulant or antiplatelet therapy, emphasizing that bleeding in HHT is not an absolute contraindication.
ARTICLES
LINKS