Social media opens new avenue to advocacy in rheumatology
Political activism is more accessible than ever thanks to the amplification offered by social media, and rheumatologists can use social media — particularly Twitter — to advocate for the profession and their patients, according to Angus Worthing, MD, private practice rheumatologist and chair of the Government Affairs Committee for the American College of Rheumatology.
Worthing recently sat down with Healio Rheumatology to discuss his rheumatology advocacy campaign, called #ThingADay, in which he posted actions rheumatologists could take each day to advocate for the profession and to improve patient care.
Stay Informed and Active
One of Worthing’s recommended tasks was to learn more about biosimilars, which as he stated in the Twitter post, are “the most medically acceptable [and] politically feasible way to lower rheum drug prices.”
Worthing said biosimilars can be thought of roughly as generic biologic drugs; the main difference between generics and biosimilars is that biosimilars can have slight differences from their brand name equivalences due to their size and complexity.
“The FDA did not have the authority to approve [the generic versions of] biologics until the Affordable Care Act included that authorization in 2010,” Worthing explained. “Now the FDA has a pathway for a biosimilar approval process and there are 18 biosimilars that have been FDA-approved — several in rheumatology — but unfortunately only two of those biosimilars are available for rheumatology patients in the marketplace.”
For biosimilars to become readily available in the U.S., Worthing said step therapy needs to be reformed and insurance companies and pharmacy benefits managers need to be more transparent. According to current step therapy protocols, Worthing said, biosimilars can only be used if the preferred drug is tried and shown to be ineffective.
“Even when I prescribe a biosimilar, which is about 20% less expensive than a bio-originator or brand name, it’s often not approved. Instead, the patient is supposed to take the more expensive drug,” Worthing said. “Step therapy and these kinds of legislation management tools are some of the most frustrating parts about being a doctor in the U.S. today and they are very frustrating for patients because they delay effective treatment.”
While Worthing wants to improve the availability of biosimilars and has been working with the ACR to connect with leaders in Congress on this issue, he noted that his goal for other rheumatologists is to educate themselves and come to their own conclusions about biosimilars.
“I think the main way that rheumatologists can get involved is simply to learn and become comfortable with what a biosimilar is and find out more about them,” he said. He suggested an ACR white paper, “The Science Behind Biosimilars,” (of which he is a coauthor) as a good starting point.
Promote Research and Preventive Measures
Another action item from #ThingADay was to email Congress in support of arthritis research, specifically a $20 million request to the Department of Defense’s (DOD) Congressionally Directed Medical Research Programs (CDMRP) to create an arthritis research program. Worthing noted that one in three military veterans have arthritis and it is the second most common cause of medical discharge.
“The DOD is an excellent place for arthritis and rheumatology research to happen, partly because they can design and implement ways to protect the joints of our service members; for example, to avoid injuries that would lead to osteoarthritis of the knee or other joints. They also have a serum bank, so blood samples are drawn from active service members that can be tested for evidence of autoimmune diseases later on. There are also excellent longitudinal medical records that can be researched to find out some potential causes and treatments for arthritis.”
Additionally, Worthing suggested rheumatologists support increasing access to DEXA scans, in particular by advocating for the Increasing Access to Osteoporosis Testing for Medicare Beneficiaries Act (S. 283). Worthing said since reimbursement for DEXA scans decreased to less than the cost to provide the service, far fewer scans have been provided. “Now unfortunately we are seeing an uptick in ... surprise hip fractures ... which is really a shame in the United States, that we are seeing worsening in a medical problem that is easy and inexpensive to prevent,” he said.
According to Worthing, S. 283 “raises the reimbursement for a DEXA scan service to a level that is sustainable and allows doctors to provide the service, and we hope that more people will be able to obtain this screening test so that we can prevent more fractures.”
Develop a Professional Voice
Worthing finds value in Twitter as a platform that gives everyone a voice. “It’s such an effective way to communicate with fellow advocates, people involved in health policy and also the actual leaders and their staff on Capitol Hill,” he said. “It’s instantaneous and free and can be leveraged really quickly. When influencers, or people in media or leaders — the people who are writing bills and legislation — see tweets and retweet things, ideas and issues can come up and suddenly get noticed.”
Worthing said he created the #ThingADay campaign to provide easy access to many ideas that anyone could implement in their typical day. He wanted to create a handy guide on “how to email Congress, how to read up on the issues, how to connect with other people, invite Congress into your office if you’re a physician — all the little things you can do, large or small, sort of as ‘one thing a day’ to be a political advocate.”
He said the ACR’s Legislative Action Center showed increased activity after the #ThingADay campaign, which is the exact response he had hoped for. In his volunteer leadership role with ACR, Worthing helps coordinate ACR’s response to federal decisions, and one of his goals is to increase the number of rheumatologists who use ACR’s online Legislative Action Center.
“Ultimately, I think my job as kind of a lead advocate for rheumatology is to get people using these tools on their own and making their own — either Twitter threads or using [the information] on their own in productive ways,” he said. “I usually try to encourage people to use social media, which is, I think, really effective on a professional level ... putting out a professional face as a physician advocate.”
Worthing added that RheumPAC, the ACR’s political action committee, is an additional way to pool a group of voices. “For a small specialty like rheumatology, with only 6,000 out of the million doctors in the country, RheumPAC is a very effective way for us to leverage our voice,” he said. He noted that RheumPAC is for ACR members only, and supports “candidates on both sides of the aisle who are champions of rheumatology reforms.”
He added, “I think in a representative democracy, our institutions require informed input, and I strongly support my fellow doctors and our patients to raise their voice[s] because we are the experts that Congress needs to hear from, and social media and Twitter are a great way to do it.” – by Amanda Alexander
Disclosure: Worthing reports no relevant financial disclosures.