Network Promotes PEN-Plus at 4th Global Congress on Sickle Cell Disease

Network Co-Chair Gene Bukhman (left) and NCDI Poverty Voices Advocacy Fellow Eunice Owino (center) meet with the SickleInAfrica team at the 4th Global Congress on Sickle Cell Disease.

A team that included NCDI Poverty Network Co-Chair Dr. Gene Bukhman, Voices Advocacy Fellow Eunice Owino, and Advocacy & Training Associate Lauren Brown traveled to Paris in June to represent the Network and promote PEN-Plus at the 4th Global Congress on Sickle Cell Disease (SCD).

PEN-Plus provides lifesaving SCD treatment by decentralizing care services such as hydroxyurea, pain management, education, and counselling, thus making healthcare accessible to the world’s most vulnerable. You can learn more about PEN-Plus here.

Key goals of the Network’s participation at the Global Congress on SCD were to share how PEN-Plus can offer cost-effective SCD treatment in poor, remote communities and to meet with other SCD stakeholders and identify opportunities for collaboration.

The NCDI Poverty Network team is grateful to have had the opportunity to share a booth with the SickleInAfrica (SIA) team and meet with other SCD stakeholders at the Congress, including ASH (American Society of Hematology), Novartis, Consortium on Newborn Screening in Africa (CONSA), Global Blood Therapeutics (GBT), the Sickle Cell Disease Coalition (SCDC), the Clinton Health Access Initiative (CHAI), and representatives from the Uganda Ministry of Health.

Although NCDI Poverty Network Steering Committee Member Dr. Julie Makani was not able to attend the Conference in person, she led a virtual side-event focused on advanced SCD therapy in Africa. Dr. Makani is the Principal Investigator for the Sickle Pan-African Research Consortium (SPARCo), an initiative of SickleInAfrica. Dr. Makani was recently named a “standout voice in African public health” by Harvard Public Health for her work in genomic research, advocacy, and awareness for SCD in Africa.

Dr. Bukhman shared the NCDI Poverty Network’s goal to alleviate the burden of non-communicable diseases like SCD in low-income countries through the PEN-Plus strategy at numerous events during the Congress, including at a SCD stakeholder meeting with Novartis and CONSA, at a side event hosted by GBT and SCDC, and the advanced SCD therapy side event hosted by Dr. Makani.

Voices Advocacy Fellow Eunice Owino shared her experiences as a person living with SCD at the side event hosted by GBT and SCDC and promoted her SCD advocacy work as the founder and executive director of Sickle Cell Uhuru Trust at the advanced SCD therapy side event.

The Network strives to work with the global SCD community in efforts to understand, treat, and cure this disease. If you are interested in collaboration, please apply for Network membership.