Porphyria Educational Services
PORPHYRIA EDUCATIONAL SERVICES BULLETIN
Vol. 1 No. 34 August 22, 1999
FOCUS: Porphyria Patient Advocacy Program
The Porphyria Patient Advocacy Program is a private, non-profit
grassroots organization founded to represent the interests of
porphyria patients nationwide and dedicated to ensuring that all
porphyrics have timely access to the highest quality medical
care in the world.
In furtherance of this mission, Porphyria Patient Advocates
are committed to the following:
Educating porphyria patients on the disease porphyria itself.
Providing a brochure with an overview of the disease.
Providing information specific to the patient's type of porphyria.
Providing a "To My Doctor" letter of introduction for porphyria
patients to use when entering an Emergency Room for treatment.
Educating patients on the delivery of porphyria health care.
Sharing with patients the hurdles of testing and retesting for confirmation
Sharing with porphyria patients the information needed for "timely" and
"accurate" porphyria testing.
a. At onset of acute attack.
b. Before administration of glucose.
c. Collection without exposure to light, air and kept
between 36 and 40 degrees.
d. Containing correct preservatives.
Sharing with the porphyria patients the need to request single rooms,
control noise and lighting.
Educating porphyria patients on the restrictions government
and the private sector impose on the care of porphyria patients.
* Home Care is unavailable for porphyria patients
in about half of the states currently in the U.S.
unless the porphyria patient is considered
homebound for other diagnoses.
* Porphyria is not considered a homebound disease.
*IV home infusion may often me obtained through
working with individually assigned case management
mediators from your insurance carrier.
Educating the porphyria patients in the role that they can play
to affect change in the nation's health care system;
Ensuring that health care decisions are made by the porphyria
patients and their doctors and are based on the medical needs of patients,
not financial considerations.
*The porphyria patient must ask the patient advocate for
assistance in this role.
Informing porphyria patients of federal, state, and private
sector health care reform initiatives;
Protecting porphyria patients' rights against needless
government and private sector interference;
Promoting porphyria patient access to reliable information about
state-of-the-art medical technologies and treatments.
Through email porphyria support lists, the American Porphyria
Foundation, NIH Clinical Trials, porphyria focused websites.
Articulating porphyria patient concerns to members of Congress,
the executive branch, and state representatives, including
insurance commissioners, medical directors of medical insurance providers.
Developing and supporting initiatives to eliminate arbitrary
restrictions and bureaucratic delays imposed by government and the private
sector on the practice of medicine and the delivery of quality care;
Promoting fairness and equality in the health care system.
To motivate porphyria patients to become "citizen lobbyists"
for their own health care reform and encourage them to play a more proactive
role in the legislative process that can help to ensure porphyria patients
have access to quality health care.
While Porphyria Patient Advocates encourage porphyria patients
to take part in health care debate, Porphyria Patient Advocates also
provide assistance to porphyria patients who are experiencing problems in
the managed health care system. Porphyria patients are encouraged to
contact their medical insurance providers and seek a case management worker
to develop a medical treatment plan specific for the individual porphyria
Brochures which are free to the public from the national Patient
Advocacy Program/Organization provide patients with helpful information on
how managed care works, the pitfalls of managed care, questions to ask
before choosing health insurance, and how to fight back when patients have
a problem with their health plan.
Porphyria Patient Advocacy Patient Advocacy has achieved in it's
short history several great accomplishments.The success has only been
possible because of strong and solid support from porphyria patients and
>porphyria knowledgeable physician and medical care providers throughout the
United States. As individuals, our efforts to fight for patient rights
seem insignificant compared to the agendas of the managed care industry and
other organizations who have enormous corporate resources. But, individual
porphyria support groups working together to form a single grassroots
coalition of hundreds or thousands of voices, there is no
politician, corporation or government agency -- no matter how large or
powerful -- who can ignore us.
On June 18, 1997 President William J. Clinton signed the Volunteer
Protection Act, which aims to protect volunteers of associations, and
nonprofit groups from liability. This legal protection is extended to
volunteer Porphyria Patient Advocacy programs.
Even with this Federal enacted law, Porphyria Patient Advocates
face intimidation by emergency room medical personnel. In some instances
during the nearly two years since its enactment porphyria patients themselves have
filed grievances against patient advocates because they felt having an
advocate would guarantee medical care.
With porphyria the disease, like its very nature,there are no
guarantees. When porphyria patients contact a Porphyria
Patient Advocate, they do so without any guarantees.
The Porphyria Patient Advocate role is that foremost of being a
listener, secondarily a helpmate. Porphyria patients must understand that
what they share with their advocate can not be held against their advocate.
Porphyria Patient Advocate when asked by the porphyria patient
themselves may accompany a porphyria patient through the admission
process in hospitalization. The porphyria patient must indicate to the
advocate their desire for the advocate's present during patient interview
process and any imput regarding the disease porphyria itself, and
porphyria resources including porphyria specialists and testing centers.>
Decision making, or under the law "persons who may provide
consent to health care on behalf of a minor or patients determined by a
physician to be incapacitated" is NOT the role of a Porphyria Patient
Advocate, unless the Patient Advocate has been given a "Durable Power of
Attorney" that specifies the authority to make health care decisions for
the porphyria patient.
This clearly means that the Porphyria Patient Advocate can not
tell medical care providers which pharmaceuticals to use, dosage of
medications or intravenous fluids, or anything pertaining to approval for
medical procedures ie., placement of pic lines, catheters, etc.
Porphyria Patient Advocate can and are encouraged to have available
updated lists of Safe and Unsafe Drugs, general descriptions of
Intervention Therapies, overviews on the disease, and a list of
porphyria knowledgeable physicians and porphyria specialists as
well as testing laboratory addreses and phone numbers.
Porphyria Patient Advocates have participated in numerous "town
hall" meetings, press events, field hearings, and genetic disoders and
medical research forums, genetic disorders and medical insurance coverage
Porphyria Patient Advocates also have contacted Washington asking
for legislation of a declaration of a National Porphyria Awareness Week.
Porphyria Patient Advocates also have provided educational articles
for media as well as providing media contacts who are knowledgeable in
porphyria. Mailbag Letters-to-the Editor introducing the general public to
the disease porphyria have been made available to porphyrics to submit
to their local and regional newspapers and other media.
Porphyria Patient Advocacy programs activate the public and inspire
them to participate in the legislative process and public awareness of
the disease porphyria itself. Such advocacy has been and will continue to be
the key to our success.
And as health care needs and issues change in the future, Patient
Advocacy will remain a strong constant -- fighting on the side of
porphyria patients to ensure that all porphyrics have timely and adequate
access to the highest quality health care in the world.
Become informed as a porphyric and become an advocate for
other porphyrics. Together we can succeed! Porphyria is real, Porphyrics