How many hemophiliacs are there in the US?
In the early 1990s, the Centers for Disease Control and Prevention (CDC) conducted a study with health departments in six U.S. states to count the number of males with hemophilia in those states. Using those results, the researchers estimated that 18,000 males in the United States had hemophilia.
Where can I find information on hemophilia treatment centers?
Hemophilia Treatment Center (HTC) Directory CDC supports and funds a national network of hemophilia treatment centers (HTCs). You can use the HTC directory to: Search for the names and contact information of hemophilia treatment centers and staff that are part of the federally funded HTC network
What are the advantages of a hemophilia treatment center?
HTCs Improve Health. A CDC study of 3,000 people with hemophilia showed that those who used an HTC were 40% less likely to die of a hemophilia-related complication compared to those who did not receive care at a treatment center. 2 Similarly, people who used a treatment center were 40% less likely to be hospitalized for bleeding complications.
How many treatment centers are there in the United States?
Today, there are approximately 141 treatment centers and programs across the country. The HTC network is partially funded by the US Centers for Disease Control and Prevention, Maternal and Child Health Bureau, and other federal agencies. What each HTC has in common is a comprehensive model of care.
How are hemophilia treatment centers funded?
The CDC Division of Blood Disorders provides funding for several programs including ones that support research, surveillance, and prevention for bleeding and clotting disorders including hemophilia.
How many treatments are there for hemophilia?
The recommended treatment plan for haemophilia depends on how severe it is. There are 2 main approaches to treatment: preventative treatment, where medicine is used to prevent bleeding and subsequent joint and muscle damage. on-demand treatment, where medicine is used to treat prolonged bleeding.
What organizations help with hemophilia?
4 Hemophilia Support Organizations You Should Know AboutNational Hemophilia Foundation. The NHF started in 1948, with the goals of discovering better treatments and eventually a cure for bleeding and clotting disorders. ... Coalition for Hemophilia B. ... Hemophilia Federation of America. ... World Federation of Hemophilia.
Are there treatments available now for hemophilia?
Hemlibra® (also known as ACE 910 or emicizumab) It can be used to either prevent or reduce the frequency of bleeding episodes in people with hemophilia A. This treatment product can be given by injection under the skin.
Why is hemophilia treatment so expensive?
Not only do prices rise steadily as each new product comes on the market, demand is growing — and pushing costs upward — as more and more clotting factor is used to prevent bleeding episodes, not just to treat them.
Why is there no cure for hemophilia?
Hemophilia cannot be cured because it is a genetic disorder. This means that the problem comes from an error in a person's DNA. Since every single cell in a person's body has their own copy of DNA, every single cell has the same disorder.
What does the National Hemophilia Foundation do?
NHF is dedicated to serving all people with a blood or bleeding disorder in the US. We provide online education for people with rare factor disorders, and a conference for people with hemophilia and inhibitors.
What is the life expectancy for individuals with hemophilia?
Estimated median life expectancy of patients with hemophilia was 77 years, 6 years lower than the median life expectancy of the general Dutch male population (83 years).
Can hemophilia carriers donate blood?
Simply put, anyone with a bleeding disorder or symptoms of a bleeding disorder should not donate blood.
How much does hemophilia cost?
Treatment for hemophilia is extremely expensive. This is a lifetime expense. The average cost is $40,000 to $50,000 a year. Complications from hemophilia can bring further expenses, which may be over $100,000.
How often do hemophiliacs need treatment?
Standard half-life therapies: Standard half-life therapies are used to treat hemophilia A and B, some types of von Willebrand disease, and some rare factor disorders. Dosing can be anywhere from three times a week to every day, depending on the person.
What research is currently being done on hemophilia?
Researchers have also made progress on a treatment for hemophilia B, which affects the factor IX clotting agent in the blood. Hemophilia B is more rare than type A. A few different clinical trials are investigating gene therapy for hemophilia B, which would target factor IX with a corrective copy of the gene.
The John Bouhasin Center for Children with Bleeding Disorders
Cardinal Glennon Children’s Medical Center St. Louis University Department of Pediatrics 1465 South Grand Blvd. St. Louis, MO 63104
Saint Louis University Center for Bleeding and Thrombotic Disorders
Hemophilia Treatment Center, Adult Program St. Louis University Hospital – West Pavilion 3655 Vista Avenue, 2nd Floor St. Louis, MO 63110
Missouri Hemophilia Treatment Center
University of Missouri Health Care 400 N. Keene Street, Suite 111 Columbia, MO 65201
Comprehensive Care Model
HTCs were created because people with bleeding disorders, their families and healthcare professionals demanded them. In 1973, the National Hemophilia Foundation (NHF) launched a two-year campaign to establish a nationwide network of centers to diagnose and treat hemophilia and other bleeding disorders.
Education Emphasis
HTCs provide more than just treatment, Cohen says. “One of the major roles of the HTCs is education,” she explains. When children begin prophylaxis treatment, for example, HTCs will teach parents and caregivers, and, eventually, the children, how to infuse themselves so they can treat at home.
Psychosocial Needs
HTCs also address psychosocial needs.
Becoming an Insider
Tom Wilmarth, 36, of Rochester, New York, knows firsthand just how supportive an HTC can be. When his son, John, got his routine infant immunizations five years ago, the baby’s body developed some strange bruising and bumps. Then a blood test caused his hand to swell up and turn blue. The diagnosis was severe hemophilia B.
Hemophilia
Hemophilia is a complex, inherited bleeding disorder caused by a deficiency in clotting factors. (Usually factor VIII or IX.)
Hemophilia Treatment Centers Offer Specialized Care
This is the biggest reason that Hemophilia Treatment Centers are so vital to those living with the disease. Studies by the Center for Disease Control have shown that hemophilia patients who received care at a hemophilia treatment center were 40% less likely to die of bleeding related complications that those who received care elsewhere.
Comprehensive Hemophilia Treatment Centers Across the Country
Today there are over 140 federally funded comprehensive hemophilia treatment centers spread across the nation. These centers provide a wide range of services. They are typically staffed by highly trained specialists including:
Higher Levels of Care with Lower Risk of Complications
Centralized locations allow medical researchers, who might otherwise have limited access to data, compile information and collaborate on care models for hemophilia and other bleeding disorders. By working together and sharing information, researchers can improve hemophilia and bleeding disorder protocols and develop more effective treatments.
Where is hemophilia most prevalent?
Hemophilia prevalence varies widely across the United States and is highest in Midwestern and Northeastern states. The estimated incidence of hemophilia among U.S. births is 1 birth per 5,617 male births for hemophilia A and 1 birth per 19,283 male births for hemophilia B. Among all males with hemophilia, just over 4 in 10 have the severe form ...
Why is there a large variation in the prevalence of hemophilia between states?
A number of observations from this study need further investigation: The large variation in the prevalence of hemophilia between states is thought to be due primarily to the hereditary (passed down from one’s parents) nature of hemophilia and known migratory patterns (when people with hemophilia moved between states) early in U.S. history.
Why does hemophilia not clot?
Hemophilia is an inherited bleeding disorder in which the blood does not clot properly due to a lack or decrease in a protein called clotting factor. The two most common types of hemophilia are hemophilia A, which is due to a lack of clotting factor VIII (8) ...
What are the two most common types of hemophilia?
The two most common types of hemophilia are hemophilia A , which is due to a lack of clotting factor VIII (8) and hemophilia B, which is due to a lack of clotting factor IX (9). Either type can lead to spontaneous bleeding into muscles, organs, and joints as well as prolonged bleeding following injuries or surgery.
Why was the hemophilia population so young in the 1980s?
The young age of the hemophilia population is likely due to high death rates in the 1980s and 1990s due to infections from HIV and infection-related complications from hepatitis C resulting from exposure to contaminated treatment products.
How old are people with hemophilia?
Among all males with hemophilia, just over 4 in 10 have the severe form of the disorder. The average age of persons with hemophilia in the United States is 23.5 years. Compared to the distribution of race and ethnicity in the U.S. population, white race is more common, Hispanic ethnicity is equally common, while black race ...
When was the HTC study conducted?
Researchers from CDC and the U.S. HTC Network conducted a study using data collected during 2012–2018 on all male patients who visited federally supported U.S. HTCs. The study aimed to
What kind of doctor is a hematologist?
Hematologists: specialists in blood disorders. Pediatricians: specialists in caring for infants, young children and teenagers. Nurses: medical specialists in bleeding disorders care. The nurse is probably the person you will see most frequently.
What kind of therapists help with bleeding disorders?
The hematologists, nurses, social workers, and physical therapists not only help people with bleeding disorders with their medical care issues, but also lend tremendous emotional support. Many people with bleeding disorders use the resources of their HTC for many years because the staff understands their unique needs.
Who funds hemophilia?
Since 1974, Congress has authorized and funded hemophilia programs at the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA). NHF advocates for support of these federal hemophilia programs that provide funding for research, surveillance, prevention and services for people with bleeding disorders.
What are the federal programs for bleeding disorders?
The bleeding disorders community has long advocated for creation of and funding for several federal programs that focus on research, surveillance, and treatment services provided to people with bleeding disorders.
What is the CDC Division of Blood Disorders?
The CDC Division of Blood Disorders provides funding for several programs including ones that support research, surveillance, and prevention for bleeding and clotting disorders including hemophilia. Funding also supports patient education and outreach for individuals with hemophilia and women with bleeding disorders, as well as an information clearinghouse on these disorders. CDC programs help to enhance public and scientific understanding of hemophilia and other bleeding disorders, which has resulted in the development and implementation of strategies to diagnose women with bleeding disorders and prevent co-morbidities and secondary complications from hemophilia.
Which states have the highest prevalence of type A, but not type B?
Slight regional differences were seen between disease types. For instance, New Hampshire and Vermont were among the states with the highest prevalence of type A, but not type B. ...
Is hemophilia a male or female condition?
The study focused on males, who are most affected, as hemophilia is an X-linked condition. If a male inherits an X chromosome with a disease-causing gene from his mother, he will have hemophilia as he has only one X chromosome. Females have two such chromosomes, making the disease rarer in them.
Comprehensive Care Model
- Each HTC provides access to multidisciplinary health care professionals: 1. Lab medical technologists and pathologists 2. Hematologists (doctors who specialize in blood) 3. Orthopedists (doctors who specialize in bones, joints, and muscles) 4. Physical therapists 5. Nur…
Education Emphasis
Psychosocial Needs
Becoming An Insider
