We are a small but growng group on the island of Oahu. We welcome patients, caregivers, family and friends with PH to meet, learn from and find common understanding with others in a similar circumstances. Please feel free to contact us and visit our page often for our next support meeting.
Events
Outcome of our May 30th PHA Support Group Meeting
Visit to the Senator's Office
Marla, Elsa and Barbara G. who are members of Hawaii's PH Support Group had productive meetings on July 30 with the legislative aides to Senator Inouye and Senator Akaka. We brought them materials about PH supplied by the Association and talked to them about PH, its symptoms, medications and how it has altered our lives. We shared our stories about misdiagnosis and emphaisized that Hawaii does not have one recommended pulmonary hypertension doctor. We emphasied that this is a situation that needs to be remedied.
We brought copies of HR 6568, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2008, and asked that the Senators support a companion measure in the Senate. We pointed out that this bill with its allocation of monies for the education of health care professionals would help Hawaii improve the quality of care it is able to give its citizens.
Barbara Sakamoto, Senator Inouye's aide, told us about Senate Bill 3230, presently before the Senate Approriations Committee on which Senator Inouye sits which encourages the National Heart Lung and Blood Institue to support the establishment of a clinical research network that would provide for expanded clinical trials and facilitate collaboration and data sharing among PH investigators. Senator Inouye strongly supports this bill. She promised to make him aware of our requests and indicated that she thought he would be supportive.
We left the Federal Building feeling good about the talks and hopeful that our visit will help secure funding for research and education about pulmonary hypertension.
Thank you Congressman Abercrombie for helping us fund research, education and outreach for pulmonary hypertension.
Four members of the Hawaii PH Support Group visited Congressman Neil Abercrombie, D Hawaii, in his home office in Honolulu. Ms. Amy B Asselbaye, the Congressman's Chief of Staff, was also present.
The Congressman was familiar with the Tom Lantos Research and Education Act and had taken the time to find out more about pulmonary hypertension. He listened to our stories and asked many questions. At the end of the meeting he stated he would sponsor our bill in the House and that he would work hard to get others on board.
Pictures
Photo from Senator Inouye's office
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Marla, Barbara and Elsa at Senator Inouye's office
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Congressman Neil Abercrombie, D-Hawaii, met with members of Hawaii's Pulmonary Hypertension Support Group. From the left, Elsa, Leo, Congressman Abercrombie, Barbara, and Marla
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The PH Hawaii Support group met on October 18, another sunny warm day on Oahu. We welcomed a new member Marie B. to our group.
The
information provided on the PHA website is provided for general information
only. It is not intended as legal, medical or other professional
advice, and should not be relied upon as a substitute for consultations
with qualified professionals who are familiar with your individual
needs.
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