Sunday, November 15, 2009

Visiting friends...

Steve White is a PHA board member. He"s also an Episcopal priest just back from a trip to Israel.  Here's part of his note on his visit with our friends from PHA Israel.  I think it gives a great view of the importance of international connections.

For more on Steve's connection to PH visit his Virtual Birthday site.

As you know, I met with some of the leaders of PHA-Israel in Tel Aviv this past Wednesday. At the dinner meeting were: Aryeh Cooperman (PHA-Israel C.E.O.), Rochi Cooperman (patient), Miriam Don (patient), Joni Berg (president of PHA-Israel).

Here is a report of that meeting from my notes.

I got to the restaurant earlier than the others. The first to arrive was Miriam Don a New Zealander and a widow who was diagnosed in the U.K. about 3 years ago. She moved permanently to Israel about a year ago. She was active in the PHA in the U.K. and while there developed a celebrity cookbook for patients titled “Miriam’s Marvels”. She was able to get celebrity chefs and some members of royalty to give her recipes without salt and that are simple to fix to make the task of cooking easier for PH patients. The book is distributed by PHA-UK and Miriam would like it to be distributed more widely. If we don’t have anything like this in the USA, we might see about reproducing it here. Of course the measurements would have to be converted from metric.

Aryeh and Rochi Cooperman arrived with Joni Berg. Aryeh was born in Ireland but grew up in Israel. Rochi is a sabra (a native-born Israeli). They have four children. Joni Berg is a native South African and a lawyer who works for the Ministry of Health in Jerusalem. His wife is a PH patient and they have 2 children.

Since Aryeh came on board as the C.E.O. on a part time basis (he is also a teacher) the organization has become more productive with materials to help patients and families. They have had several social events that have built the community and have helped raise money.

Aryeh showed me a video they produced (in Hebrew with English subtitles) and gave me copies of the DVD. It is alsoon YouTube, titled Israeli Association for PH. He also showed me a DVD on living with Flolan which is designed to make patients feel hopeful and positive. The group has also worked on excellent print media and is designing a new web site which should be up soon. I will send all the materials he gave me to Christine.

Joni Berg told me how they have been successful in getting medications and services needed by PH patients included in the so-called “basket of health services” provided to each Israeli by the government.

Some of other issues we discussed:

Recruiting new patients to the organization – I suggested getting pharma companies to allow them to place a PHA brochure in shipments of meds to patients. They had not thought of this idea and said they would try it. If we have other ideas, they would like to hear them.

There is a great need for portable oxygen concentrators that could be loaned out to patients who are housebound and need to make medical appointments or even go on holiday. The units cost about $5,000 each and Aryeh said they would like to have 2 or 3 on hand.

They need a list of medications that PH patients cannot take due to drug interactions. Do we have such a list?

Everyone expressed an interest in getting more doctors involved in PHA-Israel. Any help we can give them on how to get referrals to PHA from doctors and how to involve doctors in the organization would be helpful to them.

They would like to know the conditions under which they might be able to use content from our print media and web site for use in Israel. They are especially interested in translating the Patient’s Handbook into Hebrew. Perhaps Christine could clarify this for them. They do not get Pathlight and we might consider sending copies to our international partners.

A major challenge for them concerns how to get support groups to meet since they have so few patients spread all over the country. Until they have enough patients to establish local support groups, patients have to travel long distances at great expense and funding is needed for this.

I encouraged them to come to Conference in California. Joni was in Houston last year and attested to how helpful Conference can be for patients and caregivers. However, the long flight will require oxygen for patients who have trouble breathing.

I had a real sense that these five people regard their efforts as part of a life and death struggle that touches them directly and personally, as indeed it is (Joni’s wife is a patient, Miriam and Rochi are patients). They are incredibly dedicated and creative and I hope we can continue to support them. It seemed to mean a great deal to them that a PHA Board Member from the States took the time to be with them. It was a humbling experience for me to spend an evening with these wonderful people.

Learn more about the 50 PH Associations worldwide at PHA's International Website.

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