Our History & Timeline
In 1976, the Children’s Hospital Los Angeles Hemophilia Treatment Center was established. It was one of the first Hemophilia Treatment Centers in the United States. The Center was called the Hemophilia Comprehensive Care Center.
Pediatric Nurse Practitioner, Elaine Sergis-Davenport was a member of the first National Hemophilia Foundation working group on patient care and education. She used what she learned back to Children’s Hospital to better the programs at Children's Hospital Los Angeles.
Dr. Edward Gomperts , Director of the Center, received a Hemophilia Comprehensive Care grant from the Department of Health and Human Services. He also became President of the Hemophilia Foundation of Southern California .
In 1981, the Center started Camp Blood Brothers and Sisters with the Hemophilia Foundation of Southern California. Campers included patients with bleeding disorders and their siblings.
Like many HTCs in the US, hepatitis C (HCV) and HIV left a big mark on the Center. Many hemophilia patients got HIV and HCV(known at the time as non-A, non-B hepatitis) through their factor treatment. At the time, factor was made from human plasma. Plasma can spread infections of the blood. Unlike today, in the 1980s companies did not have the technology to screen and treat plasma for viruses and infections. As a result many of our patients were infected with one or both of these viruses when receiving treatment for their hemophilia.*
In Dr. Gomperts words, "this was a tragedy for our families, as well as our doctors and nurses. This was a “worst case scenario.” Factor, a product that helped hemophilia patients, was now harming them. Our doctors (like all in the USA) did not know what sort of illness they were up against. Many of our patients died from this infection. Our patients and parents were angry. Our staff was confused and worried.
Dr. Gomperts worked hard to help our patients. He gave Baxter and Alpha Therapeutics (now Grifols) input on new Factor VIII products. He started working with two drug companies Baxter and Alpha Therapeutics (now Grifols). He gave them input on new Factor VIII (FVIII) products for patients with hemophilia A. One FVIII product was heat-treated. This treatment was created to kill the hepatitis B virus (HBV) and it also cleared factor from the HIV virus. Because of Dr. Gomperts’ work, our hemophilia A patients were among the first in the world to use these safer plasma-derived products.
Children’s Hospital Los Angeles started their factor delivery “homecare” program for hemophilia patients. The staff was made up of one man. He delivered factor to our patients by motorcycle. Today, our home care program has grown into a 340B program and is called HOME .
Since 1986, the Center has not had any patients get HIV, hepatitis B or hepatitis C from factor products.
Mid to late 1980s
Dr. Gomperts was treating patients, doing clinical research and was active in the Los Angeles hemophilia community. One of his hemophilia patients with HIV was not allowed to attend school. Dr. Gomperts defended his patient. He also took that as an opportunity to teach the school staff about HIV and hemophilia. He was successful in getting him and other children with hemophilia in Los Angeles back into school.
Dr. Gomperts saw that many of his HIV/hemophilia patients were late to begin puberty. After seeing this, Dr. Gomperts, started a research study looking at this issue with Margaret Hilgartner and Dr. Keith Hoots. With grant money from the National Institutes of Health (NIH) the three doctors set up the Hemophilia Growth and Development Study (HGDS). They looked at the growth, neurologic status and immunity of participants. 333 hemophilia children and 48 of their siblings were studied (50 from Children’s Hospital). 222 of the hemophilia children had HIV and all of the siblings did not have HIV or HCV. All participants were between 8 and 18 years old. The participants were followed every 6 months for a total of 4 years. The study received NIH grant funding for a total of 15 years.
At Children’s Hospital Los Angeles, Drs. Fran Kaufman (Endocrinology), Marv Nelson (Neuroradiology) and Wendy Mitchell (Neurology) also worked on this national research project. More than 100 journal articles were written from the data gathered. Some articles were in the New England Journal of Medicine and others in Science. These are two of the most respected medical journals. The doctors found that HIV did not harm the brain, but HIV did change how hormones were made in some patients. This finding explains the delay of puberty in patients. Also, children with hemophilia and HIV did not do as well as other children in school. Their success at school was different because these students had to stay home a lot because of bleeds or for medical appointments.
The Center was one of the few Hemophilia Treatment Centers in the United States to have two full time social workers.
The Center was among the first in the world to receive the first man-made factor (not made from human plasma) called Recombinate.
The Center got grant money from the Los Angeles Pediatric AIDS Network. With this money we started the School Consultation Program. The Center worked with our patients’ schools to create education plans that helped our patients. Our staff and patients gave classroom presentations about hemophilia and HIV. Our patients helped us with these presentations. Taking part in the presentations helped our patients feel more in control of their situation.
In the 1990s our research and clinical trials focused on testing safer factor products. Our patients tried new FVIII, Factor IX and inhibitor products. Our patients with HIV and hemophilia participated in a study which looked at how well three HIV drugs worked to treat HIV. The three drugs were AZT, ddC and ddl.
Dr. Gomperts gave blood samples from our patients to the scientists at the NIH Lab of Genome Diversity. These scientists and others from the USA and Europe started looking at the genes of patients with HIV. They wanted to see if there was a relationship between a person’s genes and their HIV risk.
The Center was the largest Hemophilia Treatment Center in the Federal Hemophilia Treatment Center Region IX with a patient size of 350. During 1993, the Center’s nurses trained 60 hemophilia nurse coordinators through national workshops.
Care of patients with blood clots (thrombosis) was added to the Center’s clinical and research goals. The Center’s name changed to the Hemostasis and Thrombosis Center.
The Center and Children’s Hospital doctors became the first to perform a double knee replacement on an adolescent hemophilia patient with an inhibitor. This surgery let the patient become wheelchair free for the first time in 3 years.
The Center was one of the leading institutions on a new study. This study focused on licensing protein C for the treatment of congenital protein C deficiency, a factor deficiency that leads to severe clotting (the opposite of bleeding). People with congenital protein C deficiency form blood clots in their blood vessels and have brain damage and become blind as young children. The participants for the study were two of our patients. They took protein C to prevent complications of their condition. The result of the study was the successful licensing of protein C. Both Dr. Wong and Thomas C. Hofstra, PhD served as lead investigators. Jen Donkin, RN, CPNP also had a lead role in this study. Learn More .
An orthopaedic clinic was started to better help our patients with joint problems. During orthopaedic clinic, hemophilia patients are seen by an orthopaedist and a hematologist.
The Center started its international fellowship program. This program allows us to train doctors from the developing world in the care of patients with bleeding disorders. Since then we have trained seven Chinese doctors in hemophilia care.
Children’s Hospital Los Angeles’ 340B program was started. This program provides factor to our patients at a lower price than other home health pharmacies. The money made is used to improve services for our patients. The program is now called HOME (Hemophilia Outpatient Made Easy).
In March 2007, Dr. Guy Young became our director. Dr. Young is known internationally for his knowledge and expertise in caring for patients with bleeding and clotting disorders. He is also known for his cutting-edge research on these conditions. He has increased the amount of investigative research we do.
The Center started working with Kaiser Permanente in the entire Los Angeles metropolitan area to provide yearly comprehensive hemophilia evaluations for their patients.
Miller Children’s Hospital Long Beach’s Hemophilia CCS Center became a branch of our HTC.
Susan Knight , our physical therapist, was named Physical Therapist of the Year by the National Hemophilia Foundation.
We started our twinning program with EsSalud’s HTC in Arequipa, Peru through a partnership with the World Federation of Hemophilia . Through this program we will work with doctors, nurses and physical therapists from EsSalud, a health center in Peru, to teach them about how to run a successful HTC.
In January, the Children’s Hospital Los Angeles first time performed radiosynovectomies in 3 patients (2 elbows and 1 ankle) with hemophilia.
Thrombosis clinic started being held weekly to better serve our patients. We are one of the few Hemophilia Treatment Centers in the United States to have a weekly thrombosis clinic.
* Plasma factors today are specially treated to prevent HIV, Hepatitis and many other viruses and are considered extremely safe from the standpoint of causing infection