What interop means for rare disease patients

With help from Darius Tahir (@dariustahir)

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Quick Fix

— What interop means for rare disease patients: 21-year-old patient advocate Morgan Gleason made the rounds on Capitol Hill, urging lawmakers to support pending data rules and research on rare conditions, like the autoimmune disease she was diagnosed with a decade ago.

— High-profile HIMSS dropout: Cisco has withdrawn from next week’s health IT conference that generally draws upwards of 40,000 attendees, citing coronavirus concerns.

— More momentum for telehealth in coronavirus response: More health tech groups are rallying behind an effort to open up telehealth reimbursement during national emergencies.

eHealth tweet of the day: Harlan Krumholz @hmkyale “I am thinking a lot about large conferences. What could be more effective for spread? But what also could be more devastating for organizations that depend on them? We need a national dialogue & some risk-benefit calculations and modeling. Is it responsible to hold them?#COVID19"

It’s MONDAY at Morning eHealth, where your author wants to hear from patients and clinicians who have used telehealth during the coronavirus outbreak. Drop her a line at [email protected]. Tweet the team at @dariustahir, @ravindranize, @POLITICOPro and @Morning_eHealth.

Driving the Day

WHEN DATA IS LIFE OR DEATH — Patients with rare diseases — defined in the U.S as conditions affecting fewer than 200,000 people — are especially eager for upcoming data sharing rules that could make it easier to collate and transfer their own health records, Gleason tells Morning eHealth.

Gleason’s condition, juvenile dermatomyositis, affects just a few thousand patients in the U.S., and leads to muscle weakness, skin rashes and other autoimmune-related symptoms. On her recent visit to Washington, she met with Rep. Gus Bilirakis, who co-chairs the Rare Disease Congressional Caucus, as well as Reps. Darren Soto and Charlie Crist and Sen. Rick Scott, to urge them to advocate for rare disease patients by joining the caucus, funding a rare disease Center of Excellence or signing on to Rep. Eric Swalwell‘s bill, H.R. 4393 (116),aiming to pilot Medicaid coverage for precision medicine testing.

... Gleason has also been pressuring ONC and OMB to consider the data sharing needs of rare disease patients, who visit many health systems each year and manage many overlapping prescriptions, in finalizing upcoming data sharing rules. (As we’ve reported, she recently led a letter signed by more than 100 patients advocating for swift action on the rules, opposing efforts to delay them to incorporate privacy protections.)

“Most of us see a lot of providers because our diseases are complex and affect a lot of different systems,” she tells Morning eHealth. Gleason, for instance, sees 12 doctors at six health systems in three states; she takes 21 pills a day and receives two different intravenous infusions every three weeks.

While all 12 of her doctors try to share her records to make sure medications and treatments don’t have harmful interactions, it’s generally by fax. “It would be so much easier if they could get updates automatically,” she says.

Gleason added that many rare disease patients see a “super specialist” who focuses on a specific condition. “When you go to see them, they won’t make an appointment until they have all of your records or updates since you saw them last. This puts a lot of burden on the patient because the current system makes it so hard to get the information,” she said.

... Data sharing could also help researchers find cures faster, Gleason says: If claims and medical records were easier to access, more researchers could run analyses on large datasets to discover patterns among rare disease patients.

WILL TELEHEALTH MAKE IT INTO CORONAVIRUS SUPPLEMENTAL? — More health groups are publicly supporting the inclusion of a telehealth provision in an emergency funding package for coronavirus response.

That follows a campaign last week by the Alliance for Connected Care urging congressional leaders to work into the package provisions from the CONNECT for Health Act to let HHS Secretary Alex Azar waive Medicare reimbursement restrictions on telehealth during national emergencies.

We’ll be tracking that measure this week as lawmakers move closer to finalizing a deal. In the meantime, it’s gathering support in the private sector.

The American Telemedicine Association and eHealth Initiative, both of which told POLITICO last week that they’d support the effort, are urging lawmakers in a letter to make telehealth easier to access during national emergencies. The Health Innovation Alliance, HIMSS and the Personal Connected Health Alliance co-signed.

Virtual care can help clinicians reach patients who are quarantined or at home, potentially speeding diagnosis and treatment or limiting transmission to other people, they wrote.

... Peter Antall, chief medical officer at telehealth company American Well, which contracts with employers, insurers and large health systems, told Morning eHealth that traditional health centers could get overwhelmed with infected patients, he and proposed virtual care as a a way to triage or monitor patients at home. American Well is a member of the Alliance for Connected Care.

98point6, an app connecting primary care doctors with patients via text, also told Morning eHealth it supported the measure. The company unveiled its coronavirus questionnaire, which asks about recent travel and respiratory symptoms, and new clinical practice guidelines for its staff at the end of January.

... In case you missed it last week, Erin Brodwin outlined a few potential obstacles in Stat, including that it’s not always possible to digitally examine patients’ lungs.

CISCO BACKS OUT, BUT OTHER TECH GIANTS STILL IN FOR HIMSS — IBM is still planning to attend the massive health IT conference, a spokesperson confirmed to Morning eHealth, despite rumors that the tech giant would follow Cisco’s lead in backing out.

For now, HIMSS plans to proceed with the conference scheduled in Orlando for March 9-13, a spokesperson tells us, citing “limited attendee cancellations to date.” Registration has risen 7 percent since last year’s conference, and as of last week, cancellations totaled about 0.6 percent of registrants, the group announced. As we noted last week, this year’s conference will be “handshake-free.”

Cisco didn’t immediately respond to requests about how many people the decision to withdraw would affect.

... Already, a major industry conference has been shuttered because of coronavirus. As our POLITICO Energy colleague Ben Lefebvre reports, a major Houston energy conference was canceled last week over concerns about the spread; IHS Markit canceled CERAWeek for the first time in the event’s 40-year history. It was set to begin March 9.

HUMAN ERROR REMAINS A THREAT IN CORONAVIRUS SPREAD — As the Trump administration and Congress prepare to direct billions of dollars to coronavirus prevention, human error is still a formidable threat, our POLITICO colleague Brianna Ehley writes.

“Flaws in a test developed by the Centers for Disease Control and Prevention, coupled with initial federal rules limiting who should be tested, delayed the ability to diagnose patients. A hospitalized patient in California wasn’t initially tested for the virus for days, potentially leaving health care workers exposed. A whistleblower has alleged health workers weren’t properly protected when they met flights carrying American evacuees back from China,” Brianna points out.

“A recent cluster of cases at a long-term care facility in Washington state — where six people have tested positive so far and one person has died — shows that those types of mistakes could already have allowed the virus to outpace the attempts to stop it.”

VATICAN WEIGHS IN ON AI — Vatican officials have unveiled nonbinding guidelines for the development of AI, with support from IBM and Microsoft, our POLITICO EU colleague Janosch Delcker reports.

“In order for AI to act as a tool for the good of humanity and the planet, we must put the topic of protecting human rights in the digital era at the heart of public debate,” reads the “Rome Call for AI Ethics.”

The Vatican’s initiative “adds a very global and influential voice to the debate over AI ethics,” IBM’s AI Ethics Global Leader Francesca Rossi told POLITICO ahead of the launch.

“The Vatican is an institution that covers people in many different cultures, many different parts of the world, many different approaches to regulations and to the technology — that’s, to me, the real value of this document,” Rossi said.

...As Vox reports, the document suggest that AI be easily interpretable by humans and that it should not be used to discriminate, among other principles.

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