Hemophilia Advisory Panel

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1 HEMOPHILIA TREATMENT IN NEW YORK STATE STATUS REPORT AND RECOMMENDATIONS The New York State Department of Health Hemophilia Advisory Panel Richard A Lipton, M.D., Chairman Third Edition 2001

2 Requests for copies of this publication may be directed to: Blood and Tissue Resources Program Wadsworth Center New York State Department of Health Empire State Plaza P.O. Box 509 Albany, NY

3 Hemophilia Treatment in New York State Status Report and Recommendations The New York State Department of Health HEMOPHILIA ADVISORY PANEL Richard A. Lipton, M.D., Chairman Third Edition 2001

4 TABLE OF CONTENTS Introduction I. Acknowledgments... 1 II. New York State Hemophilia Advisory Panel A. Members... 2 B. Mission... 2 III. Hemophilia A. Definition... 3 B. Clinical Picture... 3 C. Genetic Inheritance... 4 IV. Other Clotting Disorders... 4 V. Modern Hemostatic Therapy for Hemophilia A. Historical Perspective... 6 B. The Comprehensive Hemophilia Treatment Center Model... 8 C. Blood Derivatives... 9 D. Other Treatments... 9 VI. Complications of Hemophilia A. Joint Disease B. Liver Disease 1. Hepatitis A Hepatitis B Hepatitis C C. HIV Infection D. Inhibitors VII. Cost of Care A. Clotting Factor Concentrates B. Financial Subsidy of Comprehensive Hemophilia Centers VIII. Concerns/Challenges A. Discrimination B. Health Insurance C. Child Health Plus D. Physically Handicapped Children s Program E. Medicaid F. Medicare G. Supplemental Security Income H. Hospital Inpatient Care IX. Research in New York State X. New York State Hemophilia Advisory Panel Highlights XI. Conclusions XII. Recommendations for Action... 22

5 XIII. Appendices A. Hemophilia Treatment Centers in New York State B. Statewide Hemophilia Data Table 1. Prevalence of Hemophilia A and B in the State by Severity and Region Table 2. Causes of Death in Persons with Hemophilia Table 3. Race of Persons with Hemophilia by Region Table 4. Age of Persons with Hemophilia by Region Table 5. Primary Source of Insurance Coverage by Region of Residence C. Emergency Room Poster D. Department of Health Emergency Care Medical Advisory E. Voluntary Hemophilia Organizations in the State F. Biographical Information on Members of the Hemophilia Advisory Panel XIV. Glossary... 32

6 INTRODUCTION The New York State Hemophilia Advisory Panel was established in 1983 to promote optimal health care for all patients in New York State with hemophilia and related genetic bleeding disorders. It is committed to maintenance of a safe, adequate, and affordable supply of blood and blood products for these patients. Through Statewide statistical monitoring of demographic, geographic, medical care source and reimbursement data, educational materials have been developed to enhance professional knowledge and public awareness. The Panel supports and promotes non-discriminatory access to comprehensive hemophilia care for all persons with hemophilia in the State. This report offers a comprehensive look at the care and treatment of approximately 1,400 individuals with hemophilia living in New York State. Written in non-technical language, it attempts to highlight the major issues affecting this population. While the report in part offers a historical perspective, the Hemophilia Advisory Panel recognizes that much of the information presented is of a temporal nature. The Panel is committed to updating this document to keep the reader informed about current issues related to the care and treatment of persons with hemophilia. This report depicts the historical evolution of hemophilia, its associated complications, and the many advances in its treatment since The focus is the interface between ideal contemporary treatment and the challenges to its provision posed by the complex health care system currently in place. The challenges of the new millennium encompass barriers to access to specialized care, as well as the escalating costs of medical care and the inadequacy of medical insurance coverage.

7 I. Acknowledgments The New York State Hemophilia Advisory Panel gratefully acknowledges the pioneering efforts of the Metropolitan Chapter of the National Hemophilia Foundation, Inc., now known as the Hemophilia Association of New York (HANY), which successfully worked for establishment of the Hemophilia Program within the New York State Department of Health. We also acknowledge the leadership of the Commissioner of Health, Antonia Novello, M.D., M.P.H., Dr.P.H, and former Commissioner Barbara DeBuono, M.D., and the dedication of Department staff, particularly Jeanne V. Linden, M.D., M.P.H.; Marcia H. Kolakoski, M.S.; and Judith Bartholomew, R.N., B.S.N. 1

8 A. Members Richard A. Lipton, M.D., M.P.H., Chairman Wayne S. Cook, Jr. Rita Epstein Diane M. Groth, R.N., C.P.N.P. Thomas D. Harrington Rosemary Holmberg, R.N., B.S.N. Jennifer Pearce, M.D. II. NEW YORK STATE HEMOPHILIA ADVISORY PANEL New York State Department of Health Staff Jeanne V. Linden, M.D., M.P.H. Marcia H. Kolakoski, M.S. B. Mission The New York State Hemophilia Advisory Panel recognizes that optimal hemophilia care is ensured when modern treatment methods are applied within the setting of specialized comprehensive hemophilia treatment centers. The Panel is particularly concerned that a significant number of persons with hemophilia in the State are unaware of or denied access to comprehensive care. Employing the resources of the New York State Department of Health, the Panel: Monitors demographic and geographic distribution of persons with hemophilia, and gathers data regarding sources of medical care. Promotes development of educational materials for health professionals and the general public. Enhanced professional and public awareness enables more persons with hemophilia to participate in comprehensive care. Recognizes the critical role that adequate medical insurance plays in enhancing the quality of life of these individuals. Remains committed to maintenance of a safe, adequate, and affordable supply of blood and blood products for persons with hemophilia, as well as the public at large. The Panel is concerned that proposals to amend the State s blood shield law could have the unintended result of making important medications needed in obstetrics, surgery, immunology, and hemophilia treatment more costly and/or less available. Promotes high standards in provision of care to persons with hemophilia for HIV-related morbidity. Remains firm in its commitment to combat discrimination against persons with hemophilia, regardless of their HIV status. Recommends the availability of genetic counseling and testing for the State's hemophilia population and their at-risk family members. 2

9 III. HEMOPHILIA A. Definition Hemophilia is a rare, hereditary bleeding disorder that results from a deficiency in blood proteins known as clotting factors. Without these clotting factors, which are necessary for formation of clots, individuals experience prolonged bleeding. Hemophilia is transmitted genetically as a sex-linked disorder, affecting males almost exclusively. However, an increasing awareness has emerged that many women who are carriers of hemophilia have a mild but still clinically significant bleeding disorder. Approximately 30 percent of cases occur in the absence of a familial history, reflecting a spontaneous mutation rate. The disease takes two forms: factor VIII deficiency, also known as classical hemophilia or hemophilia A, and factor IX deficiency, also known as hemophilia B or Christmas disease. Factor VIII and factor IX deficiencies were not recognized as separate disorders until Factor VIII deficiency is four times more common than factor IX deficiency. B. Clinical Picture Although bleeding episodes may be precipitated by injury or surgery, internal bleeding can occur spontaneously in more severely affected individuals. Most bleeding takes place in the large hinge joints, e.g., ankles, knees, hips and elbows, but can also occur in the muscles and/or vital organs. Recurring bleeding episodes can cause severe joint damage, resulting in crippling arthritis and limited range of motion. Individuals with bleeding disorders do not bleed any more rapidly than persons with normal clotting factors, but they bleed for longer periods. Although the blood may not be visible, bleeding episodes in the head, oral cavity or vital organs may be lifethreatening. Health care providers are concerned about the potential danger to persons with an undiagnosed congenital bleeding disorder, since the diagnosis might first come to medical attention following trauma or surgery. Hemophilia A Case Study James, now 17 years old, has severe factor VIII-deficient hemophilia. He was diagnosed as a newborn after emergency surgery to correct pyloric stenosis (blockage to the stomach outlet) which was complicated by excessive post-operative bleeding. The family consists of an older brother and sister, but there is no prior family history of hemophilia. James received commercial clotting factor concentrate postoperatively on one occasion in April 1983, but because of growing concerns about transfusion safety, the treatment plan was changed to cryoprecipitate. Several soft tissue hemorrhages were treated in the emergency room with cryoprecipitate during the summer and fall of After 1985, his hemorrhages were managed with heattreated factor VIII concentrate. He experienced particular difficulties from recurring hemorrhages into the right knee joint. A program of scheduled factor infusions was begun, and he had no further knee hemorrhages. By the age of five, his mother had learned how to administer clotting factor concentrate at home. While at hemophilia summer camp, James learned how to self-infuse clotting factor. He is now in the 11th grade and doing well academically. He enjoys basketball, bike riding, and hunting and fishing with his father. He has an after school job three days a week. He used 400,000 units of factor VIII concentrate in The cost to his health insurance carrier for clotting factor was approximately $220,000. 3

10 C. Genetic Inheritance At least ten proteins must work in a precise sequence to make blood clot. A defect in any of these clotting factors may lead to abnormal bleeding. The genes involved in factor VIII and factor IX production are both located on the X chromosome; therefore, hemophilia is frequently referred to as a sex-linked trait. A mutation in one of these genes can cause a clotting factor to be defective. The gene associated with hemophilia may be passed on to the subsequent generation by either parent. Women who carry the gene that causes hemophilia are called "carriers." All affected members of a given family feature the same defect in their factor VIII or factor IX gene. Factor deficiency severity is usually the same in different members of the same family. In two-thirds of hemophilia cases, there is a family history of the disorder. However, hemophilia arises as a spontaneous mutation with no familial history in approximately one-third of families. Females have two X chromosomes, while males have one X and one Y chromosome. Each parent contributes one of these sex chromosomes to each offspring. In Figure 1 on page 5, the first chart (Figure 1a) illustrates transmission of normal genes, resulting in children who are not affected. In the case of a female carrier, there is a chance that any given daughter will be a carrier and that any given son will have hemophilia (Figure 1b). The third chart depicts a hemophilic father who only has an altered X chromosome, which he will pass on to all of his daughter(s), thus making them carriers (Figure 1c). His son(s), however, will not be affected. It is possible for some carrier females to have low factor VIII or factor IX activity and be symptomatic; thus, they are called symptomatic carriers. Symptomatic carriers often require treatment following traumatic injury or prior to surgery, including dental surgery. It is possible, but rare, that both parents may carry affected genes. Sons born to a hemophilic father and a carrier mother stand a chance of hemophilia. Daughters also have a chance, since both parents have an X chromosome with the hemophilia gene. In this case, daughter(s) who do not have hemophilia are carriers. Hemophilia's inheritance pattern and its clinical pattern of bleeding have been known for many centuries. The earliest description of hemophilia is attributed to the medieval physician and rabbi Maimonides. He understood the pattern of sex-linked inheritance, and recommended against ritual circumcision in males whose brothers or male cousins had hemorrhaged during the procedure. The best-known cases of hemophilia are those among male descendants of England's Queen Victoria in the nineteenth and twentieth centuries. IV. OTHER CLOTTING DISORDERS Another important related inherited disorder of hemostasis, von Willebrand disease, is transmissible as a dominant or a recessive genetic disorder affecting either sex. Women with von Willebrand disease are particularly at risk for anemia due to menstrual blood loss. Furthermore, women with undiagnosed von Willebrand disease are likely to suffer morbidity from unneeded gynecologic procedures, including hysterectomy. Several other less common hemorrhagic disorders are inherited as recessive genetic conditions. 4

11 Figure 1. Hemophilia Inheritance Patterns Normal Normal Carrier Normal Mother Father Mother Father 100% probability - normal child 25% probability - carrier female 25% probability - hemophilic male 50% probability - normal male or female Figure 1a. Figure 1b. Normal Mother Hemophilic Father 50% probability - normal male 50% probability - carrier female Figure 1c. 5

12 V. MODERN HEMOSTATIC THERAPY FOR HEMOPHILIA A. Historical Perspective Whole blood and plasma transfusions were performed as part of hemophilia care prior to the 1960s but proved ineffective given the unpredictability of bleeding episodes, unavailability of blood products, and traveling distance to hospitals. Moreover, unless the missing clotting factor could be concentrated into a smaller injection volume, its level could not be sufficiently increased in the recipient s blood stream. Persons with hemophilia seldom lived beyond the age of 30. Those surviving were usually disabled with crippling musculoskeletal dysfunction. Surgery was extremely hazardous. The hemophilic individual was often prevented from pursuing educational and vocational objectives. A life of pain, unmet goals, and the continuing threat of hemorrhage took their toll on the psychological health of the affected individual and his family. The 1960s saw the development of procedures to isolate cryoprecipitate, the first practical clotting factor concentrate, for use in treating bleeding episodes. Cryoprecipitate could be produced in blood banks during routine blood component preparation and was soon readily available nationwide. Still, its major disadvantage was that it needed to be stored frozen and was not easily adaptable to ambulatory self-treatment. Advances in plasma protein processing in the 1960s and the 1970s triggered emergence of the commercial plasma derivative industry. These companies engaged in bulk fractionation of human plasma from thousands of blood donors into albumin, immune globulins, and clotting factor concentrates. The advantage of commercially derived concentrates was that they could be freeze-dried in convenient dosage bottles for storage at room temperature and be self-administered following reconstitution. A significant disadvantage of these products, also shared by cryoprecipitate, had been their potential for virus transmission, exposing many hemophilic individuals to hepatitis and other viral contaminants. Moreover, their availability was dependent on supply and demand in the albumin and immune globulin market. In the 1980s, hemophilia patients were struck a devastating blow when it was learned that clotting factor concentrates could become contaminated with the human immunodeficiency virus (HIV). Many hemophilic persons who received these products prior to 1985 were exposed to HIV. Approximately 80 percent of persons with severe hemophilia in New York State at that time were thought to have become infected with HIV. Since 1984, methods utilizing heat and certain solvents and detergents were developed for treating clotting factor concentrate to inactivate HIV and other viruses. Therefore, no children presently age 15 and younger have become HIV-infected from clotting factor concentrates. During the 1990s, technology for manufacturing purer clotting factor concentrate continued to advance. Using specific monoclonal antibodies and techniques such as chromatography, factors VIII and IX were separated from other plasma proteins. However, these production methods are more expensive, and treatment costs escalated. Factor VIII and factor IX concentrates may also be prepared through recombinant DNA technology. These products hold the promise of eliminating the risk of transfusion-associated diseases. While they may be subject to less price fluctuation than plasma-derived factor concentrates, these new products are presently more expensive. The timeline on the following page depicts significant events in hemostatic therapy for hemophilia. Today, hemophilia patients and their families are optimistic that hemophilia can eventually be cured with advances in gene therapy research. 6

13 7 Pre-1960s Whole blood and plasma transfusions Ineffective due to length of time for blood processing and travel time to hospitals. Disability and early death common Modern Hemostatic Therapy for Hemophilia Historical Perspective 1960s Cryoprecipitate extracted from pooled plasma of many blood donors 1970s Human plasma clotting factor concentrates commercially prepared 1980s Factor concentrates found to be infected with HIV and hepatitis 1990s Monoclonal and genetically engineered factor products developed Product could be prepared in blood banks and was readily available nationwide Convenient freeze-dried dosage bottles could be stored at room temperature until needed Heat, solvents and detergents were used to inactivate HIV and hepatitis viruses Genetic engineering reduces risk of virus transmission, but methods are expensive and costs escalated 2000s Gene therapy research Possible cure for hemophilia?

14 B. The Comprehensive Hemophilia Treatment Center Model By 1970, it became apparent to hematologists treating hemophilia that merely offering effective hemostatic therapy during a bleeding crisis was insufficient to improve patient prognosis. Several major hospitals and organizations in the United States, including Los Angeles Orthopedic Hospital, The New York Hospital and The Rochester Chapter of the National Hemophilia Foundation, developed what were to become models for a national network of comprehensive hemophilia treatment centers. These pioneering institutions documented a substantial improvement in quality of life for persons with hemophilia when the venue of care moved from the hospital emergency room to a designated hemophilia treatment center emphasizing preventive care. These early successes attracted the attention of federal health planners, who recognized that comprehensive care for a complex and chronic illness such as hemophilia could serve as a useful model for dealing with rare, potentially high-cost, multi-faceted illnesses. In 1973, federal funds became available to establish a national network of comprehensive hemophilia treatment centers, including four in New York State. These centers were encouraged to establish satellites or affiliations with other medical centers within the region. At hemophilia centers, a team of dedicated medical and nursing specialists addresses the full range of long-term needs of persons with hemophilia and other congenital clotting disorders, such as von Willebrand disease. The centers provide comprehensive, multi-disciplinary services, including hematology care, dental care, orthopedic care, physical therapy, psychosocial support, infectious disease care, and financial, vocational and genetic counseling. The hemophilia nurse specialist plays a pivotal role in patient care management. Typically, the hemophilia nurse has been the professional responsible for training patients and their family members in home administration of clotting factor concentrates. Comprehensive care, such as that in federally funded hemophilia treatment centers, epitomizes the standard of care for individuals with hemophilia, as recommended by the Medical and Scientific Advisory Council of the National Hemophilia Foundation. Hemophilia treatment centers are now reaching out to women with undiagnosed bleeding disorders due to von Willebrand disease or by virtue of being "carriers" of hemophilia. The prevalence of all cases of hemophilia and related disorders at any given time is difficult to estimate. It has been estimated that there are 13,320 cases of hemophilia A and 3,640 cases of hemophilia B in the United States. Approximately 67 percent (11,364 patients) are enrolled in 134 hemophilia centers nationwide. These centers and their affiliates provide family-centered, multi-disciplinary services to individuals with hemophilia, von Willebrand disease and other bleeding disorders. Approximately 1,000 of the 1,428 persons with hemophilia (70 percent) residing in New York State receive some care in the hemophilia treatment center setting. Three comprehensive hemophilia treatment centers are located in the New York City area. In the upstate area, the Mary M. Gooley Hemophilia Center, Inc., in Rochester operates autonomous associated facilities in Buffalo, Syracuse, Johnson City, and Albany (see Appendix A). 8

15 C. Blood Derivatives Plasma-derived factor concentrates are produced for the relatively few hemophilic persons worldwide, in part because these concentrates can be prepared easily from a byproduct of plasma procured for manufacturing more widely used derivatives such as albumin and immune globulins. Absent such a linkage, it is possible that clotting factor concentrate would not be available at a reasonable cost. Plasma derivative manufacturers obtain plasma primarily by plasmapheresis from paid donors. Plasma collected from 5,000 to 40,000 donors is pooled and processed together. In fractionation plants, physically resembling breweries or dairies, large containers of plasma are processed sequentially into clotting factor concentrate, albumin, and immune globulins. Prior to development of an HIV test in 1985, albumin and immune globulins had been sufficiently treated by heating during manufacturing to render them virus-free. Clotting factor concentrates could not be subjected to the same amount of heat without destroying their potency. Eventually, methods were developed to inactivate HIV and hepatitis virus during the manufacturing process, but not before many hemophilic individuals who had received clotting factor concentrates between 1979 and 1985 became infected with hepatitis B virus (HBV), hepatitis C virus (HCV), and/or HIV. Now, viral inactivation techniques and donor screening render factor concentrates significantly safer from the risk of HIV and hepatitis virus infection. No cases of HIV transmission due to infusion of clotting factor concentrates have been reported in the United States since March The incidence of transfusion-associated diseases has been significantly reduced by the advent of stringent blood donor screening for HIV, and the viruses causing hepatitis B and hepatitis C through detailed donor health history and sensitive blood tests. Mandatory blood and plasma donor testing for HBV, HIV and HCV in 1972, 1985 and 1990, respectively, and advances in clotting factor production technology all have contributed to the safety of factor concentrates. The safety of hemophilia products is further ensured through advances in purification and virus inactivation by physical and chemical treatments. However, present virus inactivation methods may not completely eliminate the risk of all forms of hepatitis. It is recommended that all previously unexposed potential transfusion recipients receive hepatitis B vaccination. On rare occasions, clotting factor concentrates have been contaminated with hepatitis A, and vaccination for hepatitis A is now recommended. Several effective but expensive methods of purifying clotting factor concentrates are in use. Clotting factor may be concentrated by isolation from plasma using monoclonal antibodies. Another method involves physical/chemical separation by a process known as chromatography, and then virus-inactivation by heating, using certain solvents and detergents, filtration, or combinations of these methods. High-purity clotting factor concentrates are sold at two to four times the price of concentrates with a higher plasma protein content--the higher the protein content, the less pure the product. D. Other Treatments Genetically engineered factor VIII concentrate, commonly called recombinant factor VIII, and albumin-free recombinant factor IX are licensed for use by the federal Food and Drug Administration (FDA). In fact, 60 to 70 percent of all factor IX product dispensed is recombinant. Recombinant products hold the promise of eliminating most concerns about transfusion-associated disease, but costly production methods raise other considerations about costs, and, therefore, their availability to many hemophilic individuals may be limited. 9

16 In selected patients with mild factor VIII deficiency, symptomatic female carriers of hemophilia, and some forms of von Willebrand disease, the drug desmopressin (DDAVP), which stimulates the body to release more of its own factor VIII, reduces or eliminates the need for blood products. DDAVP can be administered intravenously or as a nasal spray. Several medications are available as important adjuncts to hemophilia dental treatment, reducing the quantity of clotting factor concentrate needed. These drugs, called anti-fibrinolytic agents, prevent clots, once formed, from dissolving prematurely. VI. COMPLICATIONS OF HEMOPHILIA The complications of hemophilia include joint and liver disease, HIV immunosuppression, and development of inhibitors. A. Joint Disease The most common and debilitating complication of hemophilia, affecting approximately 80 percent of the hemophilia population, results from recurrent hemorrhages within the joints. The synovial membrane that lines all joints secretes a clear fluid that functions as a natural lubricant. Repeated bleeding, whether spontaneous or due to trauma, causes inflammation of the synovial lining (synovitis). Cells that mediate the body s inflammatory response digest not only unwanted blood in the joint, but also begin to digest the cartilage at the ends of bones. Without the protection of this cartilage, upon movement, friction between bones causes pain. Continued destruction results in scar tissue, pain, and stiffness, leading to arthritis. 10

17 B. Liver Disease 1. Hepatitis A In the United States, hepatitis A is generally considered to be transmitted by the fecal/oral route via infected food handlers or drinking water. Although several outbreaks of hepatitis A from clotting factor concentrates have been reported in Europe, only a few cases associated with solvent-detergent treated methods have occurred in the U.S. The manufacturing process for factor concentrates has been enhanced by filtration or a heating process to help eliminate hepatitis A virus. 2. Hepatitis B When clotting factor concentrate became widely available in the early 1970s, most persons with hemophilia were exposed to the hepatitis B and hepatitis C viruses. While some individuals experienced episodes of acute hepatitis, most never noted acute illness. However, most persons with hemophilia exhibited serologic (blood test) evidence of prior exposure; laboratory testing of liver function enzymes often showed abnormalities. Some individuals manifested clinical signs of chronic liver disease from hepatitis virus infection. About 15 percent of those exposed to hepatitis B exhibit persistent viral protein in the blood. For some, these findings may be associated with increased likelihood of developing significant liver disease such as cirrhosis and liver cancer. Safe and effective vaccines against hepatitis B virus are available and should be strongly considered for hemophilic individuals or other persons receiving blood or plasma derivatives who have not been previously exposed to the virus. Hepatitis B vaccination is now routine for most children. 3. Hepatitis C Hepatitis C occasionally arises in multiply-transfused individuals: however, more than 90 percent of hemophilic persons have been exposed to the virus. In most cases this exposure leads to chronic infection. The single most common reason for patients to require a liver transplant in the United States is hepatitis C infection. At its onset, this infection does not cause any symptoms, but, as the decades pass, those infected are placed at increased risk of cirrhosis and liver cancer. Several medical therapies are in use or under development to eradicate chronic hepatitis C, but these efforts to date, particularly in hemophilic individuals, have not been very effective. A laboratory test has been developed 11

18 and is in use for screening blood donors for the virus; however, a vaccine for hepatitis C is not yet available. Hemophilia Complicated by Hepatitis C Richard is a 45-year-old male with mild hemophilia and limited exposure to clotting factor concentrates. Fortunately, he is HIV-negative, but he acquired a chronic infection with hepatitis C after exposure to cryoprecipitate for trauma-related hemorrhages in late childhood. Richard is married, and his wife is employed. He has health insurance coverage through his wife's employer. He operates a commercial refrigeration repair business from his home. During the past five years, he has become increasingly weakened by progression of his hepatitis C infection to cirrhosis. Unable to meet the physical demands of repairing large refrigeration units, he is rapidly losing hard-sought clients, and his business will soon fold. Richard has been placed on the waiting list for a liver transplant. A small hepatoma (liver cancer lesion) was noticed on his abdominal CAT scan, lending urgency to the transplant. Ultimately, if he receives a donor liver and the procedure is successful, his hemophilia will have been "cured," because the donor liver should produce sufficient amounts of factor VIII. C. HIV Infection While they represent only 1.1 percent of AIDS patients reported to the Centers for Disease Control and Prevention (CDC), persons with hemophilia are a unique patient group with special needs and problems requiring special resources. As of June 30, 2000, CDC had recorded 5,357 cases of acquired immune deficiency syndrome (AIDS) among individuals with hemophilia or other congenital coagulation disorders, and no other risk factor; 236 of these were children under 13 years old at the time of diagnosis. While these numbers appear relatively low compared to the more than 753,000 total AIDS cases in the United States, the proportion of men with hemophilia exposed to HIV through factor concentrates is very high. Several serological surveys suggest that from 1979 to 1985 an estimated 80 percent of persons with severe hemophilia became infected with HIV. Persons with hemophilia, cared for at comprehensive hemophilia treatment centers, receive counseling about HIV exposure and its effects. HIV testing, as well as clinical and laboratory immunologic surveillance, are essential aspects of comprehensive hemophilia care. Past studies have indicated that from five to 20 percent of sexual partners of HIV-infected men with hemophilia may have become infected as well. Because of concerns about increased heterosexual and maternal-fetal transmission of HIV, specific risk reduction programs have been developed for sexually active individuals. The hemophilia treatment centers continue to facilitate access to specialized counseling services, support groups and other regional resources. Results of recent clinical trials suggest that the onset of AIDS in HIV-positive individuals can be postponed by early intervention with complex and expensive combinations of anti-hiv medications. In some instances, these medical treatments have significantly improved the quality 12

19 of life of infected individuals. In New York State, the death rate from AIDS is declining in this population. D. Inhibitors Approximately 25 percent of patients with hemophilia will, at some point in their lives, develop an immune response against the clotting factor protein contained in clotting factor concentrates. The emergence of an "inhibitor" as it is called, significantly increases long-term morbidity for many of those so affected. A. Clotting Factor Concentrates VII. COST OF CARE Clotting factor concentrates were initially made available only through a hemophilia center or a hospital pharmacy or blood bank. Beginning in the 1980s, commercial home care companies increasingly replaced hospitals as distributors of clotting factor concentrates. These for-profit entities serve a useful purpose in areas where treatment centers or hospitals are unable to provide clotting factor for home use. Regardless of the source, most clotting factor concentrate (90 percent) is administered at home, with its final price dependent upon the nature of the distribution system and how much health insurers are willing to pay. Fully developed distribution systems provide medical treatment coordination, shipment of concentrates and collection of used injection materials for medical waste disposal. Clotting factor replacement therapy represents the most costly aspect of hemophilia treatment. Annual expenditures for clotting factor concentrate distributed by the Hemophilia Consortium (see page 14) rose from approximately $5 million in 1987 to approximately $65 million by the end of More than $550 million were spent nationwide. Hemophilia B Complicated by an Inhibitor Alan is a thirteen-year-old boy with factor IX-deficient hemophilia. In the first year of life, he was found to have an inhibitor (an antibody) to factor IX infusions, making his hemorrhages untreatable with factor IX clotting factor concentrate. He is treated with a special clotting factor called prothrombin complex concentrate; however, this material is less effective in arresting hemorrhages, resulting in progressive musculoskeletal disabilities from recurrent bleeding into his right knee joint. Alan has been unable to extend his knee fully because of the resulting hemophilic arthritis. He frequently misses school, and often must use crutches or a wheelchair. A long-term treatment program to eradicate Alan's inhibitor was begun in 1997 and continued for 18 months. This treatment, called immune tolerance therapy, consists of a daily infusion of factor IX. Predictably, in the beginning of this treatment the strength of the inhibitor increases. However, the long-range goal is to fatigue the patient s immune system so that he becomes tolerant of the factor. This effect often occurs several months after immune tolerance therapy begins and is indicated by diminished strength of antibody measured in a special laboratory test called an inhibitor assay. Unfortunately, this therapy was not successful in Alan's case. While the inhibitor's strength diminished, it was never fully eradicated. During the immune tolerance therapy program, approximately $750,000's worth of clotting factor concentrate was required. The year prior to this treatment program, Alan had needed about $400,000 in prothrombin complex concentrate. An adolescent with factor IX deficiency without an inhibitor, on scheduled, twiceweekly factor infusions to prevent joint damage, would require approximately $150,000 to $200,000 of the concentrate annually. 13

20 However, self-treatment at home has been tremendously successful in reducing the cost of care, limiting disability and decreasing unemployment. Analyses by the National Hemophilia Foundation have shown that hemophilia treatment centers have saved federal and state governments, as well as commercial insurers, hundreds of millions of dollars by reducing the need for hospitalization, and decreasing clinic or emergency room visits. Clotting factor concentrate prices are not determined only by the plasma industry s costs of production and marketing. Acquisition and distribution of concentrates by intermediaries result in highly variable wholesale and retail prices. Although acquisition costs from manufacturers have stabilized, the final prices to patients or third party insurance payors are increasing because of inflated distribution costs by wholesale pharmacies and commercial home care companies. Nearly 30 percent of clotting factor distribution is handled by for-profit home care organizations, resulting in differences between acquisition and final prices often exceeding 150 percent. Home care agency profits are sufficient to offer hemophilia centers billing and collection services. A significant markup from acquisition costs also may be incurred if hospital pharmacies or blood banks distribute concentrates. This profit may go into a hospital's general operating budget or directly supplement the institution s costs for hemophilia care. These arrangements arise due to inadequate federal support of regional hemophilia centers and because health insurers, with few objections, are willing to pay inflated final prices. Hemophilia treatment centers in New York State are working to keep the costs of clotting factor down. Upstate New York treatment centers have developed center-owned clotting factor programs for their patients in Buffalo, Rochester and Albany. In metropolitan New York City, the three hemophilia centers, together with the Hemophilia Association of New York, have formed the Hemophilia Consortium, Inc., a not-for-profit corporation which is the country's largest bulk purchaser of clotting factor concentrate. The Consortium's buying leverage and a generic purchasing philosophy results in prices considerably below the national average. In 1992, Congress passed the Veterans' Health Care Act, requiring discounted acquisition costs for outpatient pharmaceuticals. Federally designated hemophilia treatment centers are covered entities under the Act. For three upstate hemophilia centers, acquisition costs have decreased by 15 percent. The Hemophilia Consortium similarly obtains discounts due to both the Act's provisions and the high volume of purchases. The Hemophilia Consortium has played an important role in allocating an expensive resource in times of scarcity. During 1988 and part of 1989, the nation experienced a dangerous shortage in clotting factor concentrate, directly threatening the health and safety of persons with hemophilia in the State. The shortage, continuing into the summer of 1989, was due in part to manufacturers dedicating plasma stores to producing monoclonal antibody-purified concentrate, since this complex process yields less clotting factor from each liter of plasma. Another reason for the shortage was that factor VIII production from plasma was linked to supply and demand in the world albumin market. An oversupply of albumin restrained the manufacturers' willingness to increase supplies of clotting factor concentrate until its price rose dramatically. In 1988, prices increased from approximately 10 cents to nearly 65 cents per factor VIII unit for several high purity products. Despite rapidly rising prices and a severe shortage, the Consortium was able to ensure availability of an adequate supply of clotting factor, but only after Consortium physicians agreed to cancel elective surgical procedures and sharply restrict the amount of products released for home 14

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