Hemophilia is a rare disorder that affects about 18,000 people (primarily males) in the US. It is the oldest known hereditary bleeding disorder and is often misunderstood.
According to Margaret Halona, a social worker with the Ted R. Montoya Hemophilia Program at UNM Hospital, statistically there are about 110 people with hemophilia in the state. Of those, 100 patients—ranging in age from newborn to 90— are receiving care through UNM.
Ted R. Montoya Hemophilia Program at UNM hospitals
The disorder results from deficiencies in blood clotting factors and can lead to spontaneous internal bleeding and excessive bleeding following injuries or surgery. Although it can cause truly life-threatening emergencies, the primary health concern is more often a chronic, crippling arthritis caused by repeated bleeding into the joints.
Some of these patients, says Halona, have been with the program since it was established in 1980. Recognizing the need, then State Senator Ted R. Montoya sponsored a bill to provide state funding for the program. “For 25 years, we’ve received funding which has enabled us to offer comprehensive medical care to our patients and their families,” says Halona. The program serves both adult and pediatric patients from around the state who suffer from hemophilia and other inherited bleeding disorders.
Comprehensive care involves a multidisciplinary team approach—addressing all medical and psychosocial aspects affecting the patient and their family. The core team includes a hematologist, nurse coordinator, social worker and physical therapist.
Patients who have a severe diagnosis of hemophilia are seen at the clinic at least once a year (possibly more often depending upon individual needs of the patient), while those with a less severe diagnosis are seen every two years. But, says Halona, the program staff provides ongoing medical and psychosocial management of hemophilia throughout the year—24-hours a day, seven days a week.
The primary treatment for hemophilia is "replacement therapy," which means giving, or replacing, the clotting factor that is too low or missing. Concentrates of the clotting factor are infused, or injected, directly into the bloodstream.
The best therapy for patients who have a chronic bleeding disorder is a comprehensive program in which families are educated about the disease, and its treatment, and are able to assist the patient with home treatment. “Through our education efforts, our patients and their families have become very knowledgeable about their medical condition; how to recognize a bleed; and how to treat with factor replacement,” explains Halona.
Infusing at home is more comfortable and convenient for the patient, far less expensive, and significantly reduces the burden of travel. Considering the majority of New Mexico’s hemophilia patients—about two-thirds—live in outlying and rural areas, this is an important aspect of the program, says Halona.
Prior to its establishment, most of New Mexico’s hemophilia patients received treatment through their primary physicians and local medical facilities. “It is such a rare disease, few physicians have much experience in treating or evaluating patients,” she says. With a specific program focused on treating hemophilia, the staff is able to better manage the disease.
There is no cure for hemophilia because it is a genetic disorder. However, by providing a statewide comprehensive treatment program, the Ted R. Montoya Hemophilia Program is helping prevent the devastating effects that can result when the disorder is not properly treated.
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