Rochester Team Recognized Nationally for Care and Support of Patients with Pulmonary Hypertension

November 08, 2007

R. James White, M.D., Ph.D. with Program Administrator Toni Heininger and Clinical Nurse Coordinator Karen Frutiger

A unique effort to reach out to, educate and support patients in the Rochester area with pulmonary hypertension has attracted the attention of the national Pulmonary Hypertension Association (PHA) and led to a feature article in the association’s newsletter.

The kudos reflect the growing reputation of R. James White, M.D., Ph.D., assistant professor of Medicine, Pharmacology and Physiology at the University of Rochester Medical Center as a researcher in the search for a cure for pulmonary hypertension. Also recognized is the hard work by White’s staff, Karen Frutiger and Toni Heininger, in persuading local patients to participate in clinical trials that could lead to a cure and to join a growing support group.

Pulmonary hypertension is a rare disorder where the blood pressure in the vessel that leads from the heart to the lungs (pulmonary artery) rises above normal and may become life threatening. Symptoms of pulmonary hypertension include shortness of breath with minimal exertion, fatigue, chest pain, dizziness and fainting. In many cases, the cause is unknown and the victims, young adult women.

The PHA’s mission is to prevent and cure pulmonary hypertension, and to provide support, education, advocacy and awareness to the community. Pathlight, the community’s newsletter, profiles the Rochester team’s efforts in the Fall 2007 addition. The newsletter article, written by Rachel Pokorney at PHA, is included immediately below. 

PATHLIGHT: “PHENOMENAL LIVES”

When Dr. R. James White began his pulmonary practice at the University of Rochester Medical Center in Rochester, N.Y., there wasn’t anyone in upstate New York with a large referral practice in pulmonary hypertension. PH patients in this area typically drove long distances to Cleveland or New York City. A scientist and researcher by training, Dr. White earned a joint M.D., Ph.D., from the University of Pittsburgh School of Medicine.

During his residency at the University of Rochester he became fascinated by pulmonary circulation, saying, “the understanding of what caused PH was so limited that I knew it would be an exciting area for research.”

The university supported Dr. White’s desire to develop a PH clinic, and he joined as a physician in the Division of Pulmonary and Critical Care Medicine.

Dr. White now sees PH patients almost exclusively, while concurrently working in the research lab to understand the pathobiology which causes vascular remodeling in PH. Dr. White’s dedication to the PH community has only continued to grow. He says, “I really love the different aspects of the things I do at work.”

Recently, a handful of his patients were unable to obtain insurance coverage for their PH treatments.

After writing a prescription for Remodulin® that was denied by the insurance provider, Dr. White was determined to find out why. The company’s reason: the patient, who was over 65 years of age, was too old. Infuriated, Dr. White contacted PHA and drafted a letter. Within days after hearing from Dr. White, who had written evidence of age discrimination to back him up, the company approved the same patient’s Remodulin® prescription.

In addition, he was able to meet representatives from the company and now the approval process is streamlined so that patients get their drugs in a timely fashion. As an active member, Dr. White exemplifies the commitment of PH Clinicians and Researchers (PHCR), but he is quick to say that he could not do it alone.

According to Dr. White, “Karen [Frutiger, RN, member of the PH Resource Network] runs things. Our Program Administrator Toni Heininger is doing a great job of learning the ropes for the administrative work that clinical trials require.

We work with a fantastic pulmonary fellow, a graduate student and a full-time technician in the lab. Right now, it is a lot of fun to be here!”

Dr. White’s commitment to his patients is evident through his role as both a physician and a patient advocate, while he also perseveres in the fight for a cure through his research. It is hard to imagine when he has time to sleep. But to Dr. White, all of his hard work is worth it to help his patients in their fight against PH.

*Article reprinted with permission of the Pulmonary Hypertension Association.

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