Going Digital When You Have MS


Technology is so embedded in our everyday lives that I’d challenge anyone to go more than a couple of minutes without using something digital.


But what is the future for digital when it comes to helping people with MS? When I was diagnosed ten years ago, I ended up feeling very disengaged from the healthcare system. Now I wonder whether digital solutions could have helped me have a better experience.

How technology helps me with my MS

I use technology for many things relating to my MS and the biggest emphasis is on information and knowledge. When I was diagnosed with MS, I gathered enough literature to fill a bookshelf.

Now, the majority of my information needs are met digitally. I have access to a wider variety of digital information, via the internet, smart devices and patient portals. I’m more informed and can make shared decisions with my healthcare team. The next step is that I want to be able to more easily share my health records with all my doctors, because I’m not just my MS.



Why I Became a Patient Advocate

Last year, I got diagnosed with breast cancer. My life fell apart. I lost my health, my energy, my job, my enthusiasm, my sleep, my appetite. My brain got sluggish. I was lost. Lethargic. Uninspired.

Then I started treatment. It was brutal. I shrank my sense of time to smaller units. I wasn’t thinking about what I would do after cancer. Or even making plans for the summer. I was just focused on making it to the end of the day. One day at a time. From my bed to the hospital. From the hospital to my bed. And again the next day.

Then, something happened. My body was still beaten up and shivering, but I started to see the treatment through new eyes. Amidst the misery, a new sense of purpose started to awaken in me. I realized that being a cancer patient also gave me an opportunity to be a proximate witness of cancer. I started to see the stress and trauma of treatment not as an inevitable dread, but as a design flaw that could be improved. I started to see that my pain could be turned into something positive. That I could leverage my first-hand experience of cancer, professional skills, and moment-to-moment awareness of my human experience to help oncology providers design a better cancer experience for other cancer patients. That gave me hope.

I decided to use my voice to give voice to the million voiceless cancer patients suffering in silence. I wrote a blog post about my cancer radiation experience and the distressing impact of stressful medical processes. A friend suggested I submit it to a medical journal to broaden its reach. I made improvements to turn it into an academic paper, and it was accepted for publication in the Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient. This, in turn, opened doors to new conversations with medical providers. I was met by resistance by some and gratitude by others. I joined the board of the Stanford Cancer Center Patient and Family Advisory Council. I received invitations to speak at medical conferences.

My cancer experience made me aware of a gap in understanding the needs of cancer patients I had not seen before, and the unintended suffering it adds to the cancer journey. Cancer is a black box few people understand unless they’ve had cancer themselves. We need to bring to light the unseen needs of cancer patients to empower those who care to address them. Through writing, speaking, and the use of new technologies, my objective is to reveal the human experience of cancer and help improve the patient experience for all cancer patients.

I am thrilled to be joining the Lyfebulb community as Cancer Ambassador and look forward to meeting many of you, online and offline.

This article was originally published on my blog at sylvieleotin.com.

Twitter: @sleotin

With media watchdogs on the sidelines, pharma-funded advocacy groups pushed Cures Act to the finish line

The Cures Act is soon expected to pass through Congress on its way to a White House signing ceremony.
The Cures Act is expected to pass Congress on its way to a White House signing ceremony.

The passage of the 21st Century Cures Act, which sailed through the House of Representatives last week on its way to a future White House signing ceremony, is due in no small measure to the activities of hundreds of patient advocacy groups and assorted other stakeholders that worked in overdrive the past two years pushing the bill to the finish line. Their lobbying and advocacy paid off with a 996-page bill that according to the Energy and Commerce Committee (whose slick lobbying campaign was also crucial) would “modernize” the FDA and its approval process while speeding the delivery of cutting-edge, lifesaving medicines to patients.

Progress’ touted by pharma is a huge step backward for patients

If the committee’s masterful sales job for the Cures Act is a textbook example of what constitutes effective PR and advocacy in Washington these days for legislation that may not be in the best interests of the public, press coverage offers a textbook example of media abdication of their watchdog role. As HealthNewsReview.org pointed out repeatedly over the past year and half, mainstream journalists, with some exceptions, did not look closely, ask hard questions, or explore the downsides until the last few weeks when the Cures Act was a done deal headed for victory.

As we reported in August 2015, the bill under consideration then would have been a huge step backward for FDA standards. Today’s version of the bill still is, according to many clinical researchers. “Ten years from now someone with a cancer diagnosis will be worse off with this bill,” says Dr. Vinay Prasad, an oncologist at Oregon Health Sciences University whose research has demonstrated that many new therapies ultimately fail to cure or are harmful because they are based on inadequate studies. “People will be exposed to more things that don’t work.”

Prasad and others believe loosening the FDA’s regulatory authority makes it easier for drug and device makers to market products based on lower standards, which eventually translates into more patient harm. Johns Hopkins physicians wrote in STAT that the term “FDA-approved will become a shadow of its former self.” Yale cardiologist Sanket Dhruva put it this way: “The patient advocacy groups think they are going to be getting cures from this, but that’s not likely.” The problem isn’t with the FDA, these critics say, noting that the agency is already approving more drugs more quickly than ever, but rather with drug companies that simply can’t provide evidence that their products work. Prasad has likened the Cures bill to a marathoner who wants to improve his time by buying a new stopwatch.

Provisions that will weaken consumer protections and enrich industry

The bill’s imminent passage is the culmination of a 20-year drive by conservative think tanks and the drug industry that began during the Clinton Administration to “modernize” the FDA, loosen regulation over drug and device makers, reduce the number of clinical trials needed to approve a drug, and permit advertising for off-label drug uses, all of which would help drug and device makers expand their markets. The Cures Act furthers those objectives in the following ways:

  • Randomized trials may disappear if drug companies want to sell a drug for a different medical condition than the one it’s already approved for. If a drug is currently on the market for, say, migraines, a drug company can use “real world evidence” to show that it can also be used for neck pain. Real world evidence includes data “derived from sources other than randomized clinical trials,” which could mean insurance company claims data and observational studies — less costly and less time consuming but also less reliable.
  • Some medical devices would get an easier pathway to market, one that is already relatively easy. Overall devices are held to a lower standard than drugs, but the bill gives device makers even more wiggle room by calling for the FDA to ensure that the design of clinical trials for devices designated as “breakthroughs” is as “efficient and flexible as practicable when scientifically appropriate.”
  • A combination product that’s part drug and part device such as infusion pumps, could be approved based on the less stringent rules for device regulation than the tougher rules for drugs.
  • New drugs could be approved on the basis of data summaries rather than requiring the FDA to independently analyze study results for a new drug indication. Companies would have to submit all their data, but the agency would not have to review…
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