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While 鈥榖leeding disorders鈥 and 鈥榟emophilia鈥 are common terms among the bleeding disorders community, the average person rarely hears about hemophilia. When they do hear about hemophilia, the disorder is often associated with Queen Victoria, given her family鈥檚 role in the diseases鈥 presence among royal families. The prevalence of hemophilia in the royal family during her reign is one of the most common stories told in school textbooks across the country.

While accurate, it just skims the surface of the vast history of bleeding disorders, and fails to uncover the tragedy and suffering faced by community members and the remarkable scientific advancements that have occurred over the last 20 centuries. Hemophilia Federation of America has complied this historical timeline to illuminate the complex history of hemophilia, von Willebrand Disease and other bleeding disorders, their discoveries, scientific breakthrough, and how they shaped the formation of a bleeding disorders community. When was hemophilia first named? When did hemophilia first arrive in the American colonies? When was the first treatment discovered? Read on to learn!

 

1000

2nd century AD

The first description of an inherited bleeding disorder is referenced in the Talmud, an ancient body of Jewish law, compiled in the 2nd century AD.

1639

1639

The first European with a bleeding disorder is believed to have arrived in the American colonies.

1791

1791

Isaac Zoll dies at age 19 from a minor cut on his foot. He is regarded as the first American with hemophilia.

1803

1803

Hemophilia is first named.

1837

1837-1901

Queen Victoria ruled the United Kingdom from 1837 until her death in 1901. She is origin of hemophilia in the royal families.

1839

1839

The book Domestic Medicine is published. It includes treatments for hemorrhages and internal bleeding.

1900

1900-1940鈥檚

People with bleeding disorders struggled with frequent injuries and bleeding. The average life expectancy was age 14 for people with moderate to severe hemophilia.

1926

1926

Von Willebrand Disease is first described.

1943

1943 鈥 1957

The life expectancy for someone with severe hemophilia is only 20 years old. Advances in transfusion medicine improve life expectancy.

1943 鈥 1957

Treatment is limited to whole blood transfusions, bed rest, leg braces, and compression.

1948

1948

The National Hemophilia Foundation is founded by Betty Jane and Bob Henry, parents of a son with hemophilia.

1949

1949

The US Army shows that soldiers using pooled plasma have a higher incidence of jaundice.

1957

1957

Since treatment is limited to whole blood, researchers seek alternative means to prevent and treating bleeding episodes.

1959

1959

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

1960

1960

This era marks a time of research into effective treatment for hemophilia as whole blood continues to be the only effective treatment.

Early 1960’s

Hemophilia is referred to as “the disease of kings” and the 鈥渂leeder’s disease.鈥

1963

1963

The World Federation of Hemophilia is founded.

1965

1965

Dr. Judith Graham Pool discovers cryoprecipitate. This is the first successful treatment for hemophilia beyond whole blood.

1965

After cryoprecipitate is developed, life expectancy grows to 24 years old.

1966

1966

Researchers Dr. Edward Shanbrom and Dr. Murray Thelin (who had hemophilia) begin work on developing a clotting factor concentrate.

1967

1967

Clotting factor is given to a hemophilia patient for the first time at Hyland Labs in Glendale, CA.

1968

1968

As factor concentrate becomes available, patients are given instructions on how to access it. Availability of factor concentrate varies by center and region.

1968

Women, people of color, and those living in rural areas are rarely mentioned in the media.

1969

1969

The National Hemophilia Foundation uses young boys to serve as the face of hemophilia and use taglines like 鈥楬elp Him Walk On His Own.鈥

1969

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

1969

Camp Bold Eagle in Michigan becomes the first hemophilia summer camp in the country for children with bleeding disorders. Camp gives children the opportunity to be around others like themselves, and for many this is the first time they meet others with hemophilia.

1970

1970

Despite medical advancements, many patients with hemophilia have joint damage from years prior. The community rallies support to help these patients receive appropriate care.

1971

1971

Factor concentrate usage continues to vary. Some doctors are still prescribing and instructing patients to use cryoprecipitate in the early 1970鈥檚. Treatment at home is becoming more prevalent and patients no longer feel tethered to the hospital.

1972

1972

For many years, hemophilia families are responsible for organizing blood drives to replace the donations needed for transfusions. There remain common as cryoprecipitate and clotting factor become more widely available.

1972

Celebrities join the cause to help promote blood drives.

1973

1973

Researchers identify a new method for identifying carriers of the hemophilia gene.

1973

The Hemophilia Act passes, launching the formation of a nationwide network of federally funded hemophilia treatment centers.

1974

1974

Hepatitis non-A, and non- B, later known as Hepatitis C is a growing concern due to pooled blood being used in treatment. However, it is deemed an 鈥渁cceptable risk鈥 since clotting factor extends patient life expectancy.

1975

1975

Hemophilia affects many generations within one family. The media continues to draw attention to the plight of those living with the condition. Even with advances in treatment, factors such as race, ethnicity, gender, socio-economic status, and location created barriers to treatment.

1977

1977

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…

1978

1978-1979

Those living with hemophilia now enjoy an improved quality of life.

1980

1980’s

Clotting factor was made by pooling blood of up to 10,000 donors. If one donor was infected with a viral pathogen, the entire batch was infected. In 1982, the CDC reported the first cases of HIV/AIDS among people with hemophilia, and by mid-1983, researchers were able to isolate the virus…

1981

June 1981

The CDC reports an unknown pneumonia amongst 5 young men in Los Angeles.

1982

July 16, 1982

The CDC releases a MMWR detailing a rare pneumonia amongst 3 hemophiliacs. In light of this new information, a meeting was held nine days later on July 27. At this meeting which included representatives from FDA, CDC, Public Health Service, NIH, American Blood Resources Association, and NHF, the decision is…

December 1982

An infant who had received a transfusion dies of an 鈥榠mmune deficiency illness. In the MMWR report outlining the infant鈥檚 death, the CDC also reports first AIDS cases among people with hemophilia and expresses concern 鈥渁bout the possible transmission of AIDS through blood and blood products.鈥

1983

January 4, 1983

The CDC hosts a meeting to address the growing concern over the safety of the nation鈥檚 blood supply. At the conclusion of the meeting no recommendations or changes are made.

March 1983

The CDC issues another MMWR stating that AIDS was being transmitted through infected blood and blood products, placing the entire hemophilia community at risk of infection. The CDC recommends steps to be taken immediately to keep the blood supply safe.

March 1983

HHS begins approving licensing for heat-treatment of clotting factor. Several US manufacturers begin the development of heat-treated factor concentrate after testing shows the process kills both the HIV and hepatitis viruses.

May 11, 1983

The National Hemophilia Foundation sends notices to individuals and local chapters urging patients to continue the use of clotting factor, despite warnings from the CDC that the blood supply is tainted with HIV/AIDS.

October 1983

Manufacturers begin issuing clotting factor recalls.

1984

January 1984

Based on a report from The Annals of Internal Medicine, transfusion-associated HIV/AIDS is proven to be sexually transmittable. Community members begin to consider how their HIV/AIDS status would impact their close relationships.

March 1984

The first diagnostic test for the retrovirus that causes HIV is developed. The number of people with hemophilia diagnosed with HIV/AIDS is growing rapidly.

October 1984

The CDC reports an alarmingly high number of factor concentrates contained HIV/AIDS.

1985

April 1985

Letters from the National Hemophilia Foundation continue to reaffirm the recommendation that patients use clotting factor even as product recalls are issued.

1985

In the midst of fear and confusion, Ryan White and his family from Indiana emerge as spokespersons for those living with hemophilia and HIV/AIDS, especially after Ryan is denied entry to his school.

1985

FDA stops issuing licenses for non- heated-treated clotting factor, however, the decision is left up to manufacturers on how to handle their inventory. It is 1991 before FDA issues a mandatory recall and destruction of non-heated- treated clotting factor.

1986

1986

Like Ryan White, three hemophiliac brothers are denied entry to their Florida school. The Ray brothers take their case to court and are awarded the right to return to school. Shortly after the decision, their home mysteriously burns to the ground. The media coverage following the fire is often considered…

1986

The first product for the treatment of von Willebrand Disease becomes commercially available.

1989

1989

During this period, many in the hemophilia community feel they are not getting the answers they seek. The Committee of Ten Thousand (COTT) and Hemophilia-HIV/PEER Association are formed to demand more information and transparency for those who contracted HIV/AIDS from tainted blood product.

1989

The first World Hemophilia Day is observed on April 17 to increase awareness of hemophilia and other bleeding disorders. April 17 is chosen in honor of Frank Schnabel, the founder of the WFH.

1990

1990’s

The 1990s were a period of action in the hemophilia community. National grassroots associations like the Hemophilia-HIV Peer Association, Committee of Ten Thousand (COTT), and Hemophilia Federation of America (HFA) formed to address the unheard needs of the community. During this time, information about HIV/AIDS was not readily available; information…

1990

Ryan White dies at the age of 18.

1992

Early 1992

Dr. Dana Kuhn amasses 350 documents detailing the sequence of events on how inadequate decision making led to the widespread infection of HIV/ AIDS among the hemophilia patient community.

1992

The hemophilia patient community begins to independently ask their own questions and galvanize. Local and national hemophilia organizations and others seek answers to why they were given misinformation and to hold accountable those who failed to prevent the spread of HIV/AIDS to people with hemophilia.

1992

Blood screening for Hepatitis C becomes available.

1992

Ricky Ray, one of three brothers infected with HIV/AIDS, dies at age 15.

1992

The first recombinant factor VIII concentrate becomes commercially available. It is 1997 before a recombinant IX concentrate becomes commercially available.

1994

1994

Litigation against drug manufacturers dominates most of the 1990鈥檚. Some patients file individual cases, while others are part of large class action suits. Others choose not to pursue a settlement.

1994

Hemophilia Federation of America forms as a sub-group of COTT in 1993 and becomes independent in 1994. HFA bridges the gap between the advocacy efforts COTT is working on, and is a place of education, advocacy, and awareness for families living with bleeding disorders. HFA continues today to serve as…

1995

1995

The divide in the community rests between those who were co-infected and newly diagnosed families. Many of the HIV/AIDS infected seek compensation due to the mounting medical debt and demand accountability from the government and manufacturers. Newly diagnosed families worry that the lawsuits could potentially keep them from accessing newer,…

1995

A critical question in the litigation is why heat treatment was not perfected until 1983 for clotting factor. Heat treated clotting factor was shown to effectively eliminate the transmission of HIV/AIDS and some hepatitis viruses.

1995

Following a request from the Department of Health and Human Services, a Committee of the Institutes of Medicine (IOM) reviews the scientific evidence that was available to decision makers during the early 1980鈥檚 when the HIV/AIDS epidemic first emerged. The IOM releases a report called, HIV and the Blood Supply:…

1996

1996

The financial burden of lost loved ones is felt by their families.

1996

While other countries are finalizing settlements by 1996, negotiations in the US continue due to years of stalled litigation.

1996

The negotiations of the settlement bring up painful questions for patients and families.

1996

After the IOM report and many attempts at class action suits, victims and their families gain traction in holding the pharmaceutical companies accountable for infected clotting factor products.

1997

1997

Frequent updates and information to the community are being sent regarding the status of the Ricky Ray Hemophilia Relief Fund Act.

1997

As a result of the community鈥檚 tireless grassroots efforts, Congress begins to show support for those affected.

1998

November 12, 1998

After tireless efforts, President Clinton signs the Ricky Ray Hemophilia Relief Fund Act of 1998 on November 12, 1998.

2000

2000’s

The hemophilia community between the HIV/AIDS-era families, and post- heat treated, and recombinant factor using families slowly began to heal. The financial burden of living with hemophilia was felt in lifetime caps and out-of-pocket expenses. In 2007, the Joint Outcome Study was released showing that prophylactic treatment is favorable to…

2000-2005

The hemophilia community sees a resurgence in families coming together through camps, local, and national meetings. The term, 鈥渉emophilia鈥 begins to be replaced by the term 鈥渂leeding disorders鈥 to acknowledge all bleeding conditions. Treatment costs continue to rank among the most expensive chronic conditions. The financial impact continues to burden…

2001

2001

Recombinant Factor VIII product shortages instill concern about the supply of necessary clotting factor concentrates.

2003

2003

Attention is now given to other rare bleeding disorders, the newly diagnosed, women, people of color, and those living in rural areas.

2006

2006

Although about 30% of Hemophilia A and 2-3% of Hemophilia B patients will form an inhibitor and have been of concern since clotting factor was discovered in the 1960鈥檚, resources and education about this complication had been scarce. Education and outreach increase for inhibitor families in the mid- 2000鈥檚.

2007

2007

Dr. Marilyn Manco-Johnson et al., publish a multi-year study showing a prophylactic regimen of treatment prevents joint damage in pediatric patients in the New England Journal of Medicine.

2008

2008

Lifetime caps are continuing but growing concern in the hemophilia community, especially for inhibitor patients. This issue will later inform decisions around the Affordable Care Act.

May 21, 2008

President George W. Bush signs into law the Genetic Information Nondiscrimination Act (GINA) to protect Americans against discrimination based on their genetic information when it comes to health insurance and employment.

2009

2009

A product for those with Factor I deficiency becomes commercially available.

2010

2010’s

The passage of the Affordable Care Act in 2010 assures those living with bleeding disorders cannot be denied for pre- existing conditions and that most plans eliminate lifetime cap issues. Increased research and awareness is conducted for women with bleeding disorders and von Willebrand disease. Future treatment includes the development…

2010

The Affordable Care Act (ACA) passes and is signed into law by President Barack Obama. The ACA addresses lifetime caps, pre-existing conditions, out-of-pocket expenses, young adult coverage, and other needs important to people with bleeding disorders.

2011

2011

A product for Factor XIII deficiency becomes commercially available.

2011

Hepatitis C continues to devastate the bleeding disorders community and is the leading cause of death in adults with hemophilia. This is the defining issue for the adult bleeding disorders population; available treatments are difficult and often not effective.

2012

2012

The National Hemophilia Foundation in partnership with others launches My Life, Our Future, a project to genotype hemophilia patients and carriers.

2013

2013

Continued improvements in and expansion of research, education, and conversation about von Willebrand Disease and women with bleeding disorders occurs.

2013

After years of continued struggle with Hepatitis C, a new product becomes commercially available. Hepatitis C is no longer the leading cause of death in adult hemophiliacs in the US. The new product is hailed as a cure for Hepatitis C.

2014

2014

Extended half-life clotting factor VII and IX concentrates become commercially available.

2015

2015

The first recombinant product for von Willebrand Disease becomes commercially available. The first Factor X product becomes commercially available.

2015

After 32 years of an FDA ban on blood donations from men who have sex with men (MSM), the FDA reconsiders and votes to continue the ban with a deferment period for MSM or their female partners for one year after last sexual contact.

2015-2016

Opioid dependency increasingly becomes a topic of concern for the bleeding disorders community.

2017

2017

With a new Administration in place, Congress makes multiple attempts to dismantle the Affordable Care Act. In a floor speech, Senator Bernie Sanders asserts that the hemophilia community would be disproportionally impacted. These efforts fail and the ACA is left intact.

2017

The National AIDS Memorial Grove unveils a dedicated area and memorial for the hemophilia community.

2017

A subcutaneous, bi-specific antibody therapy becomes commercially available to those with hemophilia A and inhibitors. This product gets approval for hemophilia A patients a year later.


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