Hemophilia is a rare blood clotting disorder that affects approximately 20,000 people in the United States and an estimated total of 400,000 people worldwide. The symptoms can range from mild to severe; but keeping it under control often dictates a need for prophylactic or preventative treatment to ensure that bleeding does not become an issue. Bleeding issues often lead to additional medical care, including hospital stays, which means additional costs for employers and the insured. Due to its rarity, the treatments are often extremely expensive. Hemophilia not only an impact upon a person’s quality of life, but can be quite the financial burden as well.
Medical treatments for hemophilia are among the most expensive in the nation. This is largely due to the fact that hemophilia is a rare disease and, because of this, competition doesn’t do the normal job of bringing down the costs of medications.
The most widely used treatment for hemophilia is replacement therapy of the missing clotting factors. This therapy, done on a preventative basis to help prevent bleeding or when demand therapy due to active bleeding, is given via IV to replace the proteins necessary to help the blood clot. While it is normally made of carefully treated human blood, it can also be made from other concentrates that can be mixed and used at home.
Desmopressin is a man-made hormone that is used for people who have a mild form of Hemophilia A. It stimulates the release of the factor VIII and von Willebrand factor, which binds with the Factor VIII to help it stay in the bloodstream longer.
Antifibrinolytic medicines are often used in conjuction with with replacement therapy, except Aprotinin which was shown to cause kidney problems.
Gene therapy is in clinical trials to correct the mutated genes. It is not at the point where it is wide accepted, but is still being researched
There are currently 28 different medications for hemophilia available in the United States and 21 more are in development. Prices go up with each drug release and along with the cost of the blood factor drugs, which are biological products, the cost to a patient or insurance company is exorbitant. The average cost to treat Hemophilia was approximately $270K per patient per year, and that has only increased. If there are complications from the disorder, the cost can rise to over $1 million. Drug companies have no incentive to lower the prices and insurers may not object because due to the small market size and necessity for the medications. Additionally, insurance providers or stop-loss carriers may be receiving rebates from the drug manufacturers at the end of the year. Unfortunately, those savings are rarely passed on to the patient.
Smaller companies that self-insure are the ones hit the hardest with costs from care for conditions like hemophilia. Curus Navigator can work within the system to ensure that costs are kept under control as much as possible for the company and the patients. If you are an insurance administrator, this can be a helpful tool to keep your company’s costs down now and in the future.