History of the HTCs

1943 – Advances in transfusion medicine

Advances in transfusion medicine improve life expectancy for someone with severe hemophilia to 20 years

1950s – The use of fresh frozen plasma

The use of fresh frozen plasma, which often required hospitalization, is the mainstay of treatment for hemophilia

In the late 1950s and much of the 1960s, fresh frozen plasma (FFP) was the mainstay of treatment for hemophilia A and hemophilia B. Each bag of FFP contained only miniscule amounts of factor VIII and factor IX, thus large volumes of intravenously administered FFP were needed stop bleeding episodes. Children were usually hospitalized for treatment of bleeding into a knee, an elbow, or other joint. Many adolescents were reluctant to tell their parents that they were bleeding, delaying treatment and gradually leading to chronic joint disease with crippling deformities.
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1959- First comprehensive care centers in NY

1959 – Mary M. Gooley assembles one of the first comprehensive care centers in Rochester, NY

Mary M. Gooley serves as the center’s president from 1959 until her retirement in 1986, when the clinic is renamed the Mary M. Gooley Hemophilia Center.

1964 – Judith Pool discovers a simple way to make cryoprecipitates

Judith Pool discovers a simple way to make cryoprecipitates (cold insoluble precipitates that contain factor VIII) for the treatment of hemophilia

A great advancement came in the mid-1960s with the discovery of a method for preparing factor VIII from FFP by allowing it to thaw in the cold (cryoprecipitated plasma). This preparation could be stored in frozen form as “cryoprecipitate.” This allowed intravenous administration of more factor VIII in a smaller volume, allowing outpatient treatment for bleeds and even elective surgery in persons with hemophilia A.This more concentrated form of clotting factor VIII rapidly became the preferred treatment for acute bleeding episodes in patients with hemophilia A. This is the first successful treatment for hemophilia beyond whole blood. After cryoprecipitate is developed, life expectancy grows to 24 years old.
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50thAnniversaryLayBrochure

1967 – Discovers a method to distill cryoprecipitate into clotting factor

Working at Hyland Labs, Dr. Kenneth Brinkhaus discovers a method to distill cryoprecipitate into clotting factor, an even more potent therapy for controlling bleeding

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Health Disparities

As factor concentrate becomes available, patients are given instructions on how to access it. Availability of factor concentrate varies by center and region. Women, people of color, and those living in rural areas are rarely mentioned in media descriptions of people with bleeding disorders.

1969 – Dr. Shelby Dietrich leads Orthopedic Hospital in CA

Dr. Shelby Dietrich leads Orthopedic Hospital in Los Angeles, California, in becoming a well-respected center for hemophilia care

1970s – The availability of lyophilized (dried) factor VIII

The availability of lyophilized (dried) factor VIII or factor IX concentrates allows home infusion therapy to become a common treatment practice

By the late 1960s, scientists and manufacturers developed methods for separating factor VIII and factor IX from pooled plasma, resulting in neatly packaged bottles of freezedried (lyophilized) factor VIII or factor IX concentrates. Each bottle had a label indicating the amount of factor VIII or factor IX it contained, allowing more accurate dosing. By the early 1970s, factor concentrate usage continues to vary. Some doctors are still prescribing and instructing patients to use cryoprecipitate in the early 1970s.

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Advancements in Care

Treatment at home is becoming more prevalent and some patients no longer feel tethered to the hospital. For decades, hemophilia families have organized blood drives to replace the donations needed for transfusions. These remain common, despite the increasing availability of cryoprecipitate and clotting factor concentrates.

1973 – Federally funded hemophilia treatment centers established

The Hemophilia Act of 1973 allows federally funded comprehensive hemophilia treatment centers to be established

The act provided funding for hemophilia treatment centers, which were established to provide specialized medical care and education for individuals with hemophilia and their families.

In addition, the Hemophilia Act of 1973 established a federal program to provide financial assistance for the purchase of clotting factor therapies. This program was intended to ensure that individuals with hemophilia had access to the costly clotting factor treatments they needed to manage their condition.

The Hemophilia Act of 1973 was significant because it was one of the first federal laws to provide specific support for individuals with a genetic disorder. It recognized the unique challenges faced by individuals with hemophilia and provided resources to help them manage their condition and improve their quality of life. The law has been amended several times over the years to reflect changing medical and financial circumstances.

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NHF

In 1973, NHF launched a two-year campaign to establish the creation of a nationwide network of hemophilia diagnostic and treatment centers. The goal was to provide a range of comprehensive services for patients and families within one treatment facility. Today, there are about 141 federally funded treatment centers and programs across the country.

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1977 – An article in the Journal of the American Medical Association

An article in the Journal of the American Medical Association notes it is possible to heat treat albumin, a blood product, to effectively kill some of the hepatitis viruses

While this process was industry standard in Germany, another major producer of antihemophilic factor concentrates, it did not become mainstream in the U.S. until the mid-1980s.

1980 – The hepatitis viruses and HIV threaten the worldwide blood supply

The hepatitis viruses and HIV threaten the worldwide blood supply

Thousands of plasma donations were combined as starting material for one batch of plasma-derived factor VIII or factor IX concentrate, and by the early 1980s, human blood, plasma, and plasma-derived products were discovered to be transmitting potentially deadly blood-borne viruses, including hepatitis viruses and HIV.

Manufacturers of plasma derived clotting factor concentrates attempted to kill these viruses with dry heat, solvent-detergent treatment, and pasteurization, with varying degrees of success. By 1985, most patients with hemophilia in the U.S. had been switched to heat-treated concentrates, but many had already been infected with HIV and a large percentage of them succumbed to it. Great concern about the safety of plasma derived products continued in the hemophilia community.

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