The Hemophilia Utilization Group Studies (HUGS) is one of the largest hemophilia cost of illness series of studies in the US.  HUGS is comprised of a Principal Investigator (PI) at the University of Southern California, a multi-disciplinary Steering Committee and more than 15 data collection sites with Co-PIs and data coordinators across the country.

The HUGS study data are housed in the USC School of Pharmacy, and include utilization and treatment outcomes data on children, their caregivers and adults with hemophilia A (FVIII), B (FIX) and von Willebrand Disease who receive care at Hemophilia Treatment Centers (HTCs). The HUGS HTC group includes facilities from California, Colorado, Indiana, Massachusetts, Texas, Ohio, Michigan, Washington, and Mississippi. We maintain strong collaborative relationships with the American Thrombosis & Hemostasis Network (ATHN), World Federation of Hemophilia (WFH), National Hemophilia Foundation (NHF), International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Centers for Disease Control and Prevention (CDC) and various Hemophilia societies. Over last 20 years, HUGS study data have been referenced by national and international policy makers, and we provide valuable findings not only to policy makers, but also consumers, healthcare providers and payers.

In 2016, HUGS began working with the manufacturers of a number new Sickle Cell therapies to develop and implement new culturally competent tools based upon HUGS experience in other blood disorders. The goal is to publish a baseline burden of illness to be used in advocacy and to measure any improvement from a particular treatment. Currently the Center for Inherited Blood Disorders in California and Johns Hopkins University in Maryland are recruiting patients for a pilot of the new tool set.

The inaugural study in HUGS was created in the early 1990’s by Chris Pitkin, a community activist in California man who had severe hemophilia and HIV. He worked directly with the California Department of Health Services’ Genetically Handicapped Persons Program (GHPP) to collect data on the utilization of hemophilia care in California and the use of factor.  He presented utilization results to the California legislature in order to support the ongoing funding of the GHPP. In July of 1993 Chris wrote: “The G.H.P.P. Pilot Project was developed in response to changes in the health care environment – managed care and capitated rates.  Specifically, G.P.P. is designed to evaluate the indicators that drive utilization for the treatment of hemophilia.”  Chris had been developing hemophilia data collection systems with Randy Curtis (another man with hemophilia) since 1986 and asked him to manage the data collection. He also asked Dr. Martin Lee, a professor of biostatistics, for statistical support.

Dr. Shelby Dietrich, a pioneer in development of a comprehensive care, integrated multi-specialty team model for hemophilia, was the first medical advisor and advocate for outcomes data from HUGS. When Mr. Pitkin held the first meeting of the GHPP Pilot Project in Burbank, California in 1993, Dr. Dietrich suggested the acronym HUGS and it has described the scope of these series of studies and projects. Chris Pitkin passed away in 1993 but his work endures. Dr. Dietrich led the effort to establish HUGS as the standard by which all future health initiatives would be measured in their care of people affected by hemophilia.  

On March 16th, 1994, a pilot project testing a method for collecting data from care providers in an anonymous fashion presented data on 10 severe VIII patients. This was HUGS I. Throughout 1994, data collection tools were developed and a retrospective chart review on 86 severe VIII, HIV+ patients in California was completed.  Dr. Natalie Sanders joined the team and was crucial in moving HUGS to an academic setting and recruited Denise Globe to work on the project as a graduate student. Dr. Marion Koerper also joined the team in those early years to provide physician leadership of HUGS, with Dr. Dietrich maintaining her role of matriarch. 

In March 1995, Dr. Denise Globe became the HUGS Principal Investigator and HUGS was established at the UCLA Center for Health Policy Research. By the end of 1997 HUGS II was established and data were collected on 336 patients with severe and moderate hemophilia. 

In 2001, HUGS and Dr. Globe moved to the USC School of Pharmacy. Dr. Kathy Johnson became the Principal Investigator a few years later aided by staff at USC and by a multi-disciplinary Steering Committee.  HUGS was expanded to include multiple geographic areas across the US and moved to a prospective study model.  HUGS added additional studies including patient interview tools and utilizing Markov chain analysis on the cost effectiveness of prophylaxis prospective examination of the cost of illness of hemophilia care, including the progression of arthropathy, quality of life, and proportion of avoidable hospitalizations for hemophilic patients.

In 2012 Dr. Michael Nichol became Principal Investigator after Dr. Johnson passed away unexpectedly. HUGS has completed and is currently working on more than 8 additional studies.