I am writing in regard to the episode of ER which aired
on October 9th titled “Dear Abby.” In that episode, you
highlighted the rare disease, pulmonary hypertension (PH). On behalf
of the PH community, thank you for bringing this underdiagnosed illness
to the public’s eye.
The episode did, however, have a very negative and disturbing impact
on our patients and their families. The prognosis for the young woman
with PH was unnecessarily grim. Your character, Dr. Susan Lewis, said
that the girl would experience “a slow and agonizing death” and
described PH as a disease with no treatment and no hope. This may have
been true among medical professionals 10 years ago, when 50 percent
of patients died within two years of their diagnosis. However, since
the advancement of medical research in this field, there are now three
federally approved treatments for pulmonary hypertension. These advances
have led to improved quality and quantity of life. It is not uncommon
for patients to live normal, productive lives 10, even 15 years beyond
their diagnosis.
For this reason, the Pulmonary Hypertension Association
(PHA) requests that you incorporate a more accurate picture of PH into
a future episode
or other NBC program. The thousands of patients living with this disease
fight every day for hope - please do not take this away from them by
telling the wrong story. Several of the many comments on our message
boards are attached.
PHA would like to help you continue this story. Our 5,000 members
form a community of support and a source of information about PH. Our
Scientific Leadership Council includes leading PH doctors from six
nations. Our medical
journal circulates quarterly to 31,000 cardiologists,
pulmonologists and rheumatologists in the United States. PHA’s
support group network has grown from 44 to over 110 during the past
two years. Our patient-to-patient helpline is staffed by long term
survivors who are now averaging 20 calls per day. Please allow us to
help you tell the accurate story about this disease.
Enclosed is information for your review. I hope you’ll have
a chance to see the spirit of PH patients from the video
of our last Conference. Following that, I would be pleased to organize a meeting
with patients and/or medical professionals to discuss how we might
work together. I can be reached by phone at 301-565-3004 x101 or rino@phassociation.org.
Sincerely,
Rino Aldrighetti
Executive Director
email
