Blog: Carol Grayson - Plasma For Palestinians

Jad Kanaan Jadallah Tawil is a 47 year old health activist, a father of 16 year old twins who describe him as a ‘humanist’. Jad lives with an inherited bleeding disorder called haemophilia [1], which means that his blood does not clot. He lives “within the shadow of the wall” in Al Bireh, in the occupied Palestinian territory. This structure of separation is highly controversial. Israelis argue that the wall acts as a security barrier to protect Israeli citizens from Palestinian terrorism, while Palestinians view it as an illegal attempt to annexe Palestinian land under the guise of security. Jad talked to me about the difficulties of accessing health care in a country submersed in conflict and controversy...

What does being a haemophiliac mean to you?
Being a haemophiliac means I have a different lifestyle. Many people around me have to deal with this condition around the hour. I realise I am not a lone haemophiliac in this world. I need to understand and adjust to the bleeds, pain, complications and various disabilities which I am going through. I need to make others adjust to this lifestyle. Every moment I live brings something different to my life...not only a new bleed but also the delayed domino effect of my situation.

How did becoming infected with hepatitis C (through treatment) impact on your life?
... In the 60s, 70s and 80s, the only medical treatment for haemophilia was whole blood, plasma, cryoprecipitate, and then dry factor concentrates. Those were non-clean (contaminated) products and caused hepatitis not only for me but to millions around the world. When I emigrated to the US I went through rough interferon treatment for many years in addition to haemophilia care but it was too late. I suffered sudden liver failure in 2008 but mercy and fate saved my life and I received a liver transplant in America in 2009; but as a result I am now receiving more medication (other than for haemophilia) with more side effects - and I am awaiting the unknown.

"Decision makers from both the Israeli and the Palestinian side do not realise that our priority as a community is clotting factor and comprehensive health care."

What made you relocate to the occupied Palestinian territory?
Palestine is my biological homeland, but I moved to the US to a foster country to receive better healthcare and continue my education. I could paraphrase a quote from my friend Laurie Kelly who answered the same question a few years ago when she said “Jad moved to America for better healthcare now he is moving back to Palestine to secure better healthcare for others.”

What role do you have working with haemophiliacs?
I consider myself a career activist for the haemophilia cause (and not only in Palestine).  I remember it started in my home town, al-Bireh (the twin city of Ramallah) in the late 70s when I received a haemophilia newsletter from England. Back then, I translated articles from that publication into Arabic and shared with family members and other concerned haemophilia community members (we were a group of few families then). Now my role has changed to being the elected President of the Palestine for Bleeding Disorder (PBSD); which also gave me the right to hold an official title as the “screamer” for a cause, leading the fight for the rights of haemophiliacs and their families in the Palestinian territories (West Bank, Jerusalem and the Gaza Strip).

What do you see as the main problem for haemophiliacs in the occupied Palestinian territory?
Palestinians are still ruled directly and indirectly by the Israeli Government military orders, Palestinian National Authority (Ministry of Health) has no power and resources to put haemophiliacs and national care on its MOH priority list. There is a geographical separation between Palestinian haemophiliacs in the West Bank and Gaza Strip (and even separation walls and Israeli checkpoints within those ghettos) which fragments the haemophilia community and hinders providing proper services or developing them.

What do you see as the main reasons behind the recent treatment shortage?
Decision makers from both the Israeli and the Palestinian side do not realise that our priority as a community is clotting factor and comprehensive health care.

How can this be resolved?
With the help of the international community, Factor VIII availability and comprehensive care should be granted as a basic human rights tool to stop bleeds and to handle haemophilia care around the world and in Palestine in particular. Also, medical aid in war zones must have a designated humanitarian corridor. Finally, a portion of relief and development aid designated to Palestine from major countries such as the US, Great Britain, and other countries must be allocated to an ongoing trust to support haemophilia care in Palestine.

What was the most important thing you took away from the World Federation of Haemophilia (WFH) conference in Argentina?
Networking and exchanging experiences is the key forum to build an international movement for haemophilia which should be lead by haemophiliacs and their families who suffer the most. Other stakeholders, pharmaceutical companies or corporate leaders also have roles in the struggle and in the development of health care for haemophilia. Twinning programmes among haemophilia societies is a direct way to bridge haemophilia communities throughout the world to strengthen haemophilia communities around the globe.

Do you think the WFH connects enough with people at a grassroots level?
The WFH matured to include many special interest groups other than haemophiliacs (we see the emphasis on scientists, health service providers, pharmaceutical companies and others) and any group naturally is going to emphasis its own interests first. I see that the WFH is not the ideal forum for the grassroots platform. I believe there is a need for a specialised grass roots forum to be built either from within the WFH, or a separate or independent entity that will lead in its representation of haemophiliacs and their families; a body style that needs to be more aggressive and more direct in putting the needs of haemophiliacs into a human rights approach (care before cure) - a basic priority utilising those at grassroots level, not just utilizing corporate and financiers.

What is the future of haemophilia care in the occupied territories?
Even the future is unpredictable in a non stable political situation such as in Palestine which affects the development of a health care system. The Palestinian haemophilia community is focusing its priorities on many strategic issues where we hope to see a developed haemophilia care that could secure the following:
1.  Availability and accessibility of factor concentrates and comprehensive care for ALL haemophiliacs in the West Bank and Gaza strip.
2. Creating and utilising a national Registry for Haemophilia in Palestine to reach and service all haemophiliacs.

We are not going to reach our goals in the Palestinian haemophilia community without:
a) Maximising education, training, awareness and advocacy programmes among haemophilia stake holders.
b) Securing international funds and twinning with international agencies.

Do you have a last word to say to the haemophilia and international community?
Thanks Carol for giving us at PBSD the opportunity to expose our problem to the world. There are many things to say. In a few words, let me invite the international community not to be afraid of haemophilia and Palestine or the combination of the two words. We ask you all to come forward, individuals and organisations to work together to alleviate the suffering Palestinians are facing. You can reach us at [2]

Thank you Jad.

Words: Carol Grayson

Photos (from top to bottom): Courtesy of Jad Kanaan Jadallah Tawil, or Jad himself doing interviews at a press conference before his liver failure, and standing next to Dr Hisham in Argentina.

Bottom photo: Courtesy of Shady Alassar [3] (Gaza photographer), showing a friend who is experiencing difficulties living with disabilities on the Gaza strip.

Note: Carol Grayson is a researcher and activist on global health and human rights, and the widow of a UK haemophiliac who died of contaminated blood.

Disclaimer: This blog has been written by Carol Grayson and is not necessarily reflective of Christian Aid and Ctrl.Alt.Shift values.