On this interview, we spoke to Assad Haffar, the Medical and Humanitarian Support Director on the World Federation of Hemophilia (WFH), concerning the newest milestone they’ve achieved via their Humanitarian Support Program.
Please are you able to introduce your self and inform us about your position on the World Federation of Hemophilia (WFH)?
My title is Assad Haffar, and I’m the Medical and Humanitarian Support Director on the World Federation of Hemophilia (WFH).
Please are you able to give an summary into the work carried out by the WFH and what your missions are?
The WFH is a Canada-based, internationally lively, WHO-recognized, not-for-profit group devoted to enhancing hemophilia care worldwide for the final 58 years. Our imaginative and prescient of Therapy for All speaks to a future wherein all individuals residing with an inherited bleeding dysfunction can have entry to care, no matter the place they reside.
The WFH and our international community of nationwide member organizations (NMOs) characterize the pursuits of individuals with hemophilia and different inherited bleeding issues in 147 nations. Our NMOs are the spine of our group. By them, we affect the lives of a whole bunch of hundreds of individuals with bleeding issues around the globe.
Our mission is to enhance and maintain look after individuals with inherited bleeding issues around the globe. We do that by offering our NMOs and healthcare suppliers with the data and instruments they should determine, assist, and deal with individuals residing with bleeding issues of their communities whereas selling international advocacy, trade, and collaboration to attain our frequent targets.
Picture Credit score: Korovina Anastasia/Shutterstock.com
What’s hemophilia and what are a few of the present remedy choices out there for this?
Hemophilia is a recessive inherited bleeding dysfunction. The principle reason for the situation is the absence of one of many clotting components which can be important in blood clotting. The basic circumstances are hemophilia A, brought on by the absence of clotting issue VIII, and hemophilia B, brought on by the absence of clotting issue IX.
The genes of those two inherited issues are positioned on the X chromosome and that’s the reason hemophilia A and B primarily have an effect on males and are transmitted from the moms, who’re referred to as carriers, to their male kids. This normally accounts for 70% of hemophilia circumstances.
Nonetheless, in 30% of circumstances, the dysfunction is because of new mutations within the gene and happens in individuals and not using a earlier household historical past. In uncommon circumstances, females may inherit the dysfunction and be affected on account of the wedding between a service mom and a father with hemophilia.
Therapy is dependent upon changing and giving the lacking issue, so treating hemophilia A can be handled by giving issue VIII and hemophilia B can be handled by giving issue IX.
Why is there such a big disparity in entry to remedy between developed and growing nations? What extra ought to be finished to assist cut back this disparity, making certain that everybody has sustainable and constant entry to remedy?
Hemophilia is taken into account a uncommon dysfunction, with an anticipated prevalence of 21 circumstances amongst 100,000 males. On the similar time, hemophilia remedy merchandise are costly. Due to this, well being authorities in most growing nations don’t prioritize hemophilia care, and that results in a big hole in entry to remedy between established and rising nations.
Along with this, it’s fairly difficult to diagnose hemophilia and the laboratories in most hospitals in rising nations aren’t capable of do the mandatory coagulation exams. This widens the hole within the variety of individuals with hemophilia identified between established and rising nations much more.
To scale back this disparity, there’s a want for sturdy and efficient advocacy campaigns in rising nations which might purpose to:
- Diagnose extra individuals with an inherited bleeding dysfunction with a purpose to enhance the variety of recognized individuals in these nations and present the right demographic scenario
- Present well being authorities that by making correct remedy potential, they will cut back incapacity amongst individuals with an inherited bleeding dysfunction, assist them reside the traditional lives they deserve, attend college, and work
You will have not too long ago celebrated an enormous milestone via your Humanitarian Support Program. What’s the Humanitarian Support Program and what milestone have you ever simply reached?
The WFH Humanitarian Support Program was launched in 1996. The principal goal of the Program is to answer unmet wants for remedy in nations the place entry to remedy merchandise may be very restricted or non-existent. This system helps present fast assist to sufferers in want, significantly to cease the bleeding they’ve and cut back their struggling.
The target advanced with time to point out well being authorities in recipient nations the worth of treating hemophilia with clotting issue concentrates (CFCs) and has helped a number of nations attain a degree of sustainable care. For instance, many nations who used to obtain donated remedy merchandise prior to now have now reached a enough degree of sustainability and don’t want our donations anymore: prior to now, we used to donate to 110 nations; at present we simply give donations to 85 nations since 25 nations have reached a state of sustainability.
Clotting Issue Concentrates are measured by Worldwide Models (IU). In the beginning of the Program, we donated 25 million IU yearly. This elevated as extra producers joined this system and made donations. With the exceptional enhance in donations, we hit the edge of 1 billion IUs distributed in mid-2021. That is an impressive achievement and one which we’re very pleased with.
Picture Credit score: World Federation of Hemophilia
The continuing COVID-19 pandemic has taken an enormous toll on international well being and has meant that many therapies have been delayed. What affect has COVID-19 had on bleeding issues and why does this make this milestone an ever greater achievement?
It’s fairly true that the COVID-19 pandemic has affected international well being, together with the bleeding issues group. Many flights have been canceled throughout 2020 and 2021, and lots of flight routes have been fully modified. This resulted in appreciable delays in delivering remedy to varied elements of the world—and significantly in rising nations. This affected the supply of remedy merchandise and likewise created an enormous enhance in delivery prices. Moreover, frequent flight cancelations meant that donated merchandise would keep in storage for longer intervals, which created additional price pressures.
Regardless of all these challenges, the WFH Humanitarian Support Program donations continued to move to recipient nations, making the one billion items donation milestone much more spectacular.
Collaboration has additionally performed an enormous position in COVID-19 developments and may be seen in vaccine developments in addition to the general transmission of the virus. Why is collaboration so important to bleeding issues additionally and the way has your milestone proven that by working collectively you may assist hundreds of individuals in want?
Throughout the present COVID-19 pandemic, collaboration is a necessary component in conserving the world operating. It serves to deliver all stakeholders collectively and helps maximize our mixed efforts. This was very a lot true within the WFH Humanitarian Support Program, since we have been instantly on alert when the pandemic started, and we began collaborating with skilled individuals and exploring totally different channels to verify our donations obtained to the place they needed to go.
Our donors have been very cooperative, they usually took steps to ensure that their donations reached our warehouses on time. All these collaborative efforts gave us nice outcomes. I’m proud to say that we didn’t have any hemophilia remedy product shortages in any recipient nation.
What do you suppose the long run appears like for bleeding issues?
I might say that the long run is vivid for the bleeding issues group. There have been main enhancements in remedy over the last 30 to 40 years.
Evaluating the extent of information and the range and quantity of remedy merchandise out there at present to 30 years in the past, we are able to simply see the distinction. There are nonetheless extra remedy merchandise on the horizon. For instance, gene remedy for hemophilia has an enormous potential for our group.
Picture Credit score: Modern Creation/Shutterstock.com
What are the following steps for the WFH and its involvement in bleeding issues?
The best way we have a look at bleeding issues is altering quickly with the introduction of recent classes of remedy merchandise. Sadly, absolutely sustainable hemophilia care in rising nations remains to be far off. Subsequently, the WFH might want to proceed to assist these nations of their efforts to deal with bleeding issues care. And with new merchandise authorised available in the market, we have to play a task in making certain the security and efficacy of those merchandise.
Lastly, the WFH additionally has to watch gene remedy medical trials and play an lively position in gathering all out there knowledge to ensure the secure supply of this new and vital remedy.
The place can readers discover extra data?
I encourage anybody to go to www.wfh.org to seek out out extra about our group.
About Dr. Assad Haffar
I’m the Medical and Humanitarian Support Director on the WFH. I’m a medical physician, with a specialization in Public Well being and Occupational Drugs. I joined the group 21 years in the past within the 12 months 2000. At the start of my profession on the WFH, I used to be accountable for growing applications within the Center East and African areas, along with the WFH Humanitarian Support Program. On this position, I developed hemophilia care in these two areas. For instance, within the 12 months 2000, solely 5 nations from the Sub-Saharan African area have been members of the WFH.
Fifteen years later, 14 new nation members have been a part of the federation. Earlier than becoming a member of the WFH I used to be with the Worldwide Labor Group (ILO) in Geneva. My place there gave me beneficial expertise associated to how individuals and organizations work collectively—and I used to be capable of apply that studying to my work on the WFH.
Concerning the World Federation for Hemophilia
The World Federation of Hemophilia (WFH) works to make sure each individual—together with these residing with hemophilia and von Willebrand illness (VWD), these with uncommon issue deficiencies, and ladies with bleeding issues—have entry to world-class care and recognition of their situation. Our company companions, donors, and volunteers all share this perception and we thank them for his or her previous and ongoing contributions.
Our imaginative and prescient of Therapy for All is that someday, all individuals with a bleeding dysfunction will get pleasure from a extra sure future full of promise, regardless of the place they reside. The mission of the WFH is to enhance and maintain look after individuals with inherited bleeding issues around the globe. With a purpose to obtain this, we actively pursue long-term relationships with people and organizations who share the values inherent in our complete growth mannequin.
#future #bleeding #issues