Hemophilia Disease Management by a Hospital Pharmacy-Based Home Infusion Provider


Disease management of hemophilia patients can only occur if the management of the patient's care is based upon a comprehensive care approach.

TheUniversity of Utah Hospital, through itsHome Infusion Service(UHIS), has operated a disease management

program for hemophilia patients in partnership with Utah Medicaid for nine years. The program was created in response to Utah Medicaid’s need to improve the utilization of hemophilia clotting factors through a disease management program. Utah Medicaid sought and obtained a 1915(b)Health Care Delivery Freedom of Choice Waiver from CMSto allow it to seek bids for the program. The University of Utah Hospital was awarded the contract and the UHIS program has been caring for patients with hemophilia ever since.

Hemophilia Disease Management

Disease management of hemophilia patients can only occur if the management of the patient’s care is based upon a comprehensive care approach. According to theNational Hemophilia Foundation, comprehensive care requires a team approach to the care and treatment of patients with hemophilia that goes beyond treating bleeding episodes or repairing injured joints and focuses primarily on prevention. Prevention includes physical, emotional, mental, social, financial, and educational interventions. The care team should be directed by a physician and organized to respond to these needs, with the goal of helping patients live a quality life with the freedom to direct their own lives and make decisions consistent with these goals.

UHIS recognizes this approach and has created a team organized around these goals. The team consists of a specially trained RN disease manager, a team of clinical pharmacists, home health nurses with special training in managing hemophilia patients, reimbursement specialists, social workers, physical therapists, and occupational therapists, all of whom work under the direction of the local hemophilia treatment center (HTC). All hemophilia patients whose clotting factors are paid for by Utah Medicaid must be enrolled in our disease management program, which provides all of their clotting factors and other necessary medical supplies, as well as a monthly home nursing visit. Newly admitted patients are given a comprehensive assessment to determine their physical, musculoskeletal, psychosocial, financial, home care, educational, and compliance baseline. Patients and/or caregivers are informed of the results of these assessments and are included in the care planning process, which involves the hemophilia disease manager, a clinical pharmacist, and the HTC. Family members, especially in the case of pediatric patients, are included and encour aged to become as self-sufficient as possible early in the course of their home care treatment.

The HTC physician is the key member of the team and is valuable in establishing the care plan. UHIS staff coordinates the treatment plan and the patient’s ongoing needs with the physician or designated agent. The hemophilia disease manager’s treatment plan is in accordance with the physician’s orders and treatment plan.

Ongoing care of patients involves monthly home visits by the UHIS hemophilia disease manager or, in the case of patients located at an extreme distance from our office, specially trained home health nurses contracted and trained by UHIS. Our hemophilia disease manager makes yearly trips to selected home health agencies to train one or more nurses in hemophilia disease management. The monthly home visits are made for the purpose of obtaining the following information:

  • The number, type, location, and duration of bleeds
  • The factor product(s) used and the utilization management of the products(s)
  • Contacts with the HTC or other members of the care team
  • Appointments with the HTC or other physicians and the home care staff
  • Completed education modules
  • Expiration dating of factor product(s) and rotation as necessary During these visits, the disease manager will also perform a complete review of systems (ROS), with special attention to the range of motion of the patient’s joints.

Patients are required to maintain a monthly calendar that serves as an event log. This log is reviewed by the hemophilia disease manager at the monthly visit and patients are given assistance in completing it, if necessary. This log becomes the basis of a quarterly report to Medicaid on the status of each patient.

The hemophilia disease manager contacts each patient by telephone on at least a weekly basis. During these consultations, he or she determines the patient’s clotting factor utilization, the number and location of bleeds, re-supply needs for factor and administration supplies, and any unscheduled emergency room or HTC visits. If necessary, the hemophilia disease manager may make more home visits than the required one per month. Medicaid has approved up to three of these additional visits per month.

One clinical pharmacist serves as the lead pharmacist for the program, meeting weekly and as needed with the hemophilia disease manager to review individual patient needs. All medical records are electronic, which permits fast access to patient information by all pharmacy and nursing staff.

HTC physicians will often order lab tests, which are generally done in the clinic during routine visits, but may also be done in a patient’s home if needed. In such situations, our hemophilia disease manager or designee will draw blood from the patient and take the sample to the lab. If the University Hospital lab is used, the results are available to us online, enabling our staff to review them and make appropriate recommendations to the HTC physician.

Program Implementation

Prior to beginning the hemophilia program, UHIS obtained utilization data from Medicaid to identify Utah patients receiving hemophilia clotting factors under Medicaid reimbursement. All patients were notified by Medicaid of the disease management program and informed that they would be required to participate in it in order to have their clotting factors reimbursed by Medicaid.

The Hemophilia Treatment Center was also notified and a series of meetings were held with them to explain the program and to assure them that our disease management program would be conducted in accordance with their own plan of care. It was further explained that there would be no formulary and that all clotting factor products would be covered.

Patients were also contacted by our hemophilia disease manager and informed of the program. They were asked what clotting factor products they were currently using and the amounts they had on hand. The hemophilia disease manager also attempted to determine the approximate frequency and dose of infusions for each patient.

She also determined the types and quantities of medical supplies required for infusion. In addition to obtaining this medically necessary information, the primary focus of the initial contact was to assure patients that there would be no change in the clotting factor products or ancillary supplies used in their care. Our hemophilia disease manager also explained that patients would now be required to receive a monthly home visit. They would also be required to maintain a dosing log.

Problems Encountered

One of the primary reasons that Utah Medicaid wanted to initiate a disease management program was to eliminate clotting factor overstocking and waste. A monthly home visit, during which clotting factor supplies would be reviewed, was seen as an efficient method of achieving this goal.

After beginning the home visits, the hemophilia disease manager did indeed discover some overstocking, but not to the extent that was expected. Some patients expressed concern that they would not have sufficient clotting factor on hand to treat unexpected bleeds or for when they were away from home for extended periods of time (vacations, etc). They were assured that Medicaid had placed no requirements on how many doses could be dispensed or maintained in the home, but only wanted to assure appropriate utilization.

Some patients, especially the older ones, were resistant to the requirement of a monthly home visit. They had been obtaining clotting factors and had been self-infusing for years without the need of a home nursing visit. They were assured that the hemophilia case manager was not a “spy” for Medicaid, but was there to help them manage their disease.

Problem Resolution

Clotting factor overstocking was eliminated as patients became familiar with the program and realized that the hemophilia disease manager and clinical pharmacists were only a phone call away. Resistance to the home nursing visits also disappeared almost completely after a few visits. Patients began to look forward to the visits and some would actually call asking when the hemophilia disease manager would be coming again.


The disease management and home nursing visits are reimbursed separately from the clotting factors and medical supplies. The program administration is billed under procedure code S0315 (Disease Management Program) at a monthly rate per patient. Home nursing visits are billed under procedure code T1002 (RN Services) in 15-minute increments. Patients may receive up to three home nursing visits per month in addition to the required monthly visit.


As stated above, some patients were initially resistant to the required monthly home visit. This soon abated and patients now recognize the need for and accept the visits (many actually look forward to them). One of the most successful elements of the home visits has been the opportunity they afford to educate and instruct patients and their families. Education always begins at the HTC, but unless patients have a condition that requires a visit to the HTC, they are only seen there once a year. The education provided by our hemophilia disease manager supplements and reinforces education begun at the HTC. The hemophilia disease manager has created several games for the younger patients that have been very well received.

Quarterly patient satisfaction surveys are a required element of the program. The lowest rating ever received was 95%, and there have been numerous surveys showing a satisfaction rate of 100%. We are also gratified that many of our patients have made successful lifestyle changes as a result of the program. One young man who had continuing problems with school and with the law was convinced to stay in school and out of trouble. He has since graduated from high school and gone on to attend a trade school.

We found that several of our patients, primarily the pediatric ones, had never known another hemophiliac. The hemophilia disease manager was able to convince them to attend theUtah Hemophilia Foundation(UHF) Summer Camp and the UHF Family Forum, where they became acquainted with other hemophiliacs. Some of them now communicate with each other regularly. In addition to the success of the home visit component of the program, the average cost per unit of clotting factor to Medicaid decreased from $1.46 per unit in the first year of the program to $0.852 per unit in fiscal year 2006. UHIS has received inquiries from numerous other states about the program.


From the beginning of the program, we have considered it to be a partnership with Utah Medicaid. The program has been accepted by patients, families, and healthcare providers, and has saved the state of Utah approximately $30,000,000 over the life of the program. Due to the success of the program, Utah Medicaid has approached us to design and implement disease management programs for several other chronic diseases.

William Wood, RPh, (retired), was director of Infusion Services for University Healthcare, Department of Pharmacy Services, University of Utah.

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