The Value of Openness by PatientsLikeMe ®

Last month, Rich and Paul from this year’s Team of Advisors attended the 2018 National ALS Advocacy Conference in Washington D.C. to learn about the latest ALS research, network, and meet with members of congress on Capitol Hill. Just over 600 people attended the event, including 100+ pALS and 240 first-time participants.

The event started on Sunday with opening remarks followed by an afternoon session, reception, networking dinner and entertainment. Paul and Rich had the opportunity to share with pALS about PatientsLikeMe. Read on to learn how it went and what they accomplished.

(front row: Holly Crowder, Stacy Crowder, Kathy Tavano, Team of Advisors member Paul and Tanner Hockinsmith from the ALSA; back row: Stephen Reynolds from Senator Cronyn’s office)

Day 2: Research & Policy

• Opportunities to participate in research: Rich (and other participants) gave saliva samples to the Centers for Disease Control (CDC) and blood to the National Institutes on Health (NIH).
• Interview with Rich: Rich spoke about the ALS Registry Taskforce that exists to brainstorm and come together to find ways to increase participation.
• Public Policy sessions: These sessions included time to prepare for the visit to Capitol Hill, a Congressional Panel with bipartisan Congressional staff and remarks from US Senator Bill Cassidy.

• Interview with Pat Quinn: Pat Quinn, the Ice Bucket Challenge co-founder spoke about a new voice generating software and platform.
• Research panel: Lucie Brujin, John Landers and Tody Ferguson held a panel discussion on where we are in ALS research, and what is coming in the pipeline.
• Closing remarks/strategy: Following the closing remarks, attendees had time to strategize with state chapters. Paul and Rich’s chapter (the ALS Association FL Chapter) was represented by 17 people including:

• 2 pALS, caregivers, family members, friends, the President of the ALS Association chapter in Florida and 3 researchers

(Tim Cummings (surviving spouse of ALS patient, former board president of ALS association FL chapter), Dorothy Marsh (who lost her sister to ALS), Martin Rivera (Rep. Darren Soto’s office), Team of Advisors member Rich, Talitha, and Rich’s daughter, Gigi.)

Day 3: To the Hill

Rich, Paul and the other members of their chapter headed to Capitol Hill to meet with senators, representatives and their staff.

Their mission?

The Taskforce of advocates asked U.S. Senators and Representatives to gain support for:

1. The senate and house bills dealing with the ALS Disability Assurance Act. Passage of this bill would eliminate the 5-month waiting period for Medicare.
2. Continued funding $10M for Department of Defense (DOD) ALS research
3. CDC funding $10M for the National ALS Registry
4. Continued NIH funding for $39.3B
5. Support for Steve Gleason to receive the Medal of Freedom award

They met with congressmen and their staff including:

• The offices of Senators Marco Rubio and Bill Nelson and Representatives Darren Soto, Al Lawson, John Rutherford and Ted Yoho.

Were they successful?

“There is no way to know for sure but based on questions asked by the people we met with and the notes taken we felt our mission was successful,” Paul said.

While getting support for “Right to Try” wasn’t officially part of the mission, they did discuss the topic with many of the staffers they met. Representatives Lawson, Rutherford and Yoho all voted in favor of the legislation a few weeks later.

Going forward, Rich and Paul plan to follow up with the congressmen (and their staff) to make sure their asks are met.

Want to get involved with ALS advocacy? On PatientsLikeMe, more than nearly 700 members of your community say they’re interested in advocacy — Join today to connect with others who want to make a difference.

Share this post on Twitter and help spread the word.

Do you have difficulty getting to your doctor’s appointments? Ever thought about using telemedicine? Connecting online can make it easier to get the care you need. Here, Dr. Rick Bedlack (a tenured associate professor of Medicine/Neurology at Duke University and the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study) explains the basics of telemedicine, his “Tele-ALS” program and how telemedicine could improve patient clinical trial experiences in the future.

Telemedicine 101: How does it work?

“Telemedicine” connects patients and their doctors through secure video conferencing programs (similar to “FaceTime”). Both parties need to have a computer, tablet or smartphone, and a video conferencing program that has been approved for use by the doctor’s institution. I have been offering this type of care to patients with ALS for several years now, through separate “Tele-ALS” programs at the Durham VA Medical Center (VAMC) and Duke University.

The pros of telemedicine

• No travel: The main benefit of Tele-ALS is that it allows patients with ALS who live in rural areas to continue to connect with their ALS specialist throughout their disease, even when travel becomes difficult or impossible.
• Symptoms management: This connection facilitates expert identification and management of the many modifiable symptoms patients with ALS experience throughout their illness, such as drooling, thick secretions, excessive laughing and crying, cramps, spasticity, pain, insomnia, anxiety, depression, and constipation.
• Tech troubleshooting: It also facilitates identification and triage of equipment problems such as malfunctions in speech generating devices or power wheelchairs.
• Keeping patients in the know: I have personally found it to be very useful in keeping patients informed about exciting research and alternative options and in this manner helping them stay hopeful throughout their illness.
• More accessible clinical trials: In the next year, I will pilot the first ever totally virtual ALS clinical trial. Instead of making “in person” study visits, this trial will conduct all required visits via Tele-ALS. This should make participation much simpler and more attractive for patients and families.

The cons

There are some down sides to Tele-ALS…

• From a patient’s perspective, many have told me they miss coming in and meeting in person with all the members of my team. Not all patients have a computer, tablet or smartphone, or Internet access.
• From my perspective, I miss not being able to perform a detailed neurological exam. Given this limitation, I would not offer Tele-ALS to a patient I had never seen before —only to those whom I have already examined and confirmed the diagnosis in person.
• From an administrator’s perspective, there currently is no way to bill for a typical Tele-ALS visit. This is the main reason that more clinics are not offering it. We are only able to offer it at Duke because of a generous grant from the North Carolina Chapter of ALSA.
• Finally, there is a silly rule that prevents us from crossing state lines with this care model. The VAMC has found a way around this rule and VA providers can now offer telemedicine, including Tele-ALS, “anywhere to anywhere.” Hopefully non-VA hospitals will figure out how to do this soon.

telemedicine

Going forward

As we work out some of the problems with billing and crossing state lines, I think telemedicine and especially Tele-ALS clinics are going to become much more common. If my upcoming virtual research study shows good compliance and adherence, Tele-ALS will be increasingly used in trials to minimize participant burdens as well.

For more information:

www.telehealth.va.gov

www.dukealsclinic.com/telemedicine

Have you tried telemedicine? Why or why not? Join PatientsLikeMe and share your experience with the community.

Share this post on Twitter and help spread the word.