Limited Access to Care
In parts of the U.S., as in other parts of the world, access to rheumatologists and rheumatology specialists also hinders care.
“Something that was really novel was the recognition that the issues we face in one country may be different from those in another, but in some ways, they’re very similar, too,” said Dr. Costenbader. “The cross-cutting issues we see worldwide need to be addressed.”
Project leaders continue to engage the lupus community and in January held an international stakeholder meeting to develop a global road map with specific recommendations to address the identified challenges.
“We are going to look at multi-pronged strategies, such as regulatory and advocacy efforts for drug development, and scientific consensus-building to identify the questions to address in lupus research,” says Dr. Costenbader.
Plans include developing an international communications program and forming working groups to get even more people involved, from regulatory bodies in different nations to advocacy groups and clinical and basic scientists.
“This is really the first international effort aimed at addressing lupus barriers, and now the global community is activated and energized,” Dr. Costenbader says. “I don’t want people to be overwhelmed or disappointed, but we have the energy for what we are trying to accomplish, and the key stakeholders internationally are involved. That’s a really good thing.”
Kelly April Tyrrell writes about health, science and health policy. She lives in Madison, Wis.
Reference
- Manzi S, Raymond S, Tse K, et al. Global consensus building and prioritisation of fundamental lupus challenges: The ALPHA project. Lupus Sci Med. 2019 Jul 19;6(1):e000342.
