Would you kindly give us some information about yourself?
My name is Aryeh Copperman, I am the CEO since 2005 of Isreal’s pulmonary hypertension association. I have a BA in Accounting and information systems, and Masters Degree in Public Health, from the Hebrew University in Jerusalem. I am married with 4 children. My wife has suffered from pulmonary hypertension for many years which is how I got involved with the association.
According to you is a patient association important for those who are ill or for
their relatives?
I believe that a patient association is of great importance for the patients. It is
crucial for support for the patients, the social interactions, coping with side effects of
the illness, updated information about medical developments and patient
rights, and specialists medical teams in each country. The association also fulfills the
purpose in helping the families with their management of living with and caring for
the patients in their day to day lives.
Could we ask you what triggered you to become the President of a patient
association?
My wife was became ill with pulmonary hypertension in 2005 and that year I attended a pulmonary hypertension association conference. I saw that there was a great need for a more attention, work and support for the patients and decided to get more involved. And the need for more interaction with doctors, medical companies, patients and their families.
Were there any difficulties while the association was being set up?
There are always many challenges that come up. One of the challenges was reaching
out to as many patients as possible and getting them engaged with the association.
The ongoing bureaucracy is always a challenge and so is getting medication approved in the government “basket”, politics with the different organisations, as well as with the medical companies. In order to succeed it is very important to have a Board who contributes their time and resources to work together for success.
What kind of campaigns do you organize to raise awareness? Can you please
name a few?
- Blue lips campaign – awareness
- “Give a hand” campaign – symptom education and support
- 6 minute walk campaign – giving an example of the time and effort for patients for
- walking
- Flash mob campaign
- Marketing/Awareness gifts for medical staff
Do you organize activities with other associations both on national and
international level? For example for certain days?
We work in partnership with the Association for Fibrosis and the Patients Rights
associations
Do the events organized by your Association receive coverage from the national media?
It is very difficult to get recognition and airtime for these national media channels
but we make every effort to get as much exposure as we can.
Are most of your members patients or rather relatives or caregivers? Or are
they volunteers? Are the senior members who are active paid in any way?
Most of the members are patients or relatives. We have some volunteers and
certain staff are paid.
The work carried by the association is centralized or decentralized?
According to you which one is better? Is PH Israel widespread in the country?
Our association works across the country in an effort to engage patients from all over Israel. It is indeed widespread in the country.
Would happens in the patients group chats? Are there doctors or psychologists who are founding members?
We have some therapists who are actively involved and able to facilitate the group
chats etc and support.
Can you receive or offer any kind of financial support to patients? Can you supply
psychological or financial support for those who are in need?
We do not offer financial support to patients but do work on subsidized programs to
answer their needs, e.g. for discounted medical equipment, donations of
equipment, rental of portable oxygen concentrators and subsidised travel to
medical appointments.
With other associations on domestic and international grounds can you
participate in scientific meetings or meetings with pharmaceutical companies?
We work with other organisations and make time to meet and consult. We find the
work together with the US and European associations to be very helpful.
What are your targets for 2022?
- New website
- Reaching new patients and growing our association reach
- Research development for Children with PH.
- Marketing Material / Branded educational material for medical staff
Dear Mr. Copperman thank you very much for your time and for having given us
information on your Association.
Interview courtesy of the PAHSSC, Turkish pulmonary hypertension association
Cover photo: Aryeh Copperman with Kamil Hamidullah, President of PAHSSC