On the Hill Again: Advocating to Lawmakers in a Different Country
This April/May, I embarked on what I called the “Tour de Chaos”. Three states, California on the West Coast to a Santa Cruz beach house, a conference at Stanford and a road trip; to Minnesota in the centre for my cousin’s Master’s program graduation; and to DC on the East coast to attend the Allergy and Asthma Network Asthma Bloggers Summit and Allergy & Asthma Day on Capitol Hill. This is that last section: what I called part 5 of the tour—technically it’s the last section of the last section.
Advocating on the Hill: Storytelling in a different way
In May 2017, I went to Parliament Hill in Ottawa with Asthma Canada for World Asthma Day—more about that here. May is Asthma (and Allergy) Awareness Month, and a week after World Asthma Day this year on May 9, I found myself on Capitol Hill in Washington, DC with the Allergy and Asthma Network—my disclosures are below.
Advocating on the Hill, no matter which one it is, is truly about storytelling in a different way. This year, I was partnered with a physician—an allergist from Wisconsin, Dr. Gary Steven. While we were handed three sheets of discussion points to go over with the representatives’ assistants we were scheduled to meet with, the way you make these points real, tangible, is through story. Gary has been doing the Hill circuit advocating for many years, and—while he apologized for talking too much!—I really enjoyed watching him dig right in to the points, and how these patient advocacy issues truly affected him as a physician because they affect the wellbeing of his patients. Gary’s clinic blog has a nice recap of some of the issues we advocated for.
Seeing through the physician’s lens
Seeing through the physician lens was extremely interesting for me.
Gary spoke candidly on preparation of allergen extracts for immunotherapy (allergy shots)—currently these are mixed in the office and patients have not experienced problems. Yet, despite this, attempts are being made to require mixing of allergen extracts for shots to be done in biohazard containment facilities—“the proposed action would essentially make allergy shots unaffordable for all Americans,” states Dr. Steven’s blog post. 1
He also spoke on what I learned the day before is called “non-medical switching”: when patients are switched from a drug they do well on to another of the same class by an insurer because of cost (or relationships with drug companies). He discussed the appeals process with the representatives’ assistants, and the mountains of paperwork this causes for physicians to get a patient back on the medicine they prescribed, who then have less time to devote to patients.
At many points such as this, I was able to share the patient perspective: I opted several years ago to swap myself from Symbicort which was working well for me, to Advair due to preference of the delivery device. I had to switch back as I quickly discovered Advair (likely and—and ironically—the bronchodilator component) made me much sicker and my breathing much worse. This was my choice as a patient, and I was able to immediately switch back to Symbicort when I discovered it was the Advair that made me feel worse. However, when it’s an insurance “payer” or formulary problem, patients don’t have this option—and patients suffer.
These are just two of the issues we advocated for on the Hill, ones where my eyes really opened to how patient care issues impact doctors who are trying to help patients be as healthy as possible, and make the right choices. Sometimes. the system is prohibitive to allowing patients to make the right choices.
Contrasting Parliament Hill and Capitol Hill
Other than that there was a lot more walking on Capitol Hill to cross from the Senate buildings where we spent the morning to the House office buildings where we spent the afternoon, most of the meetings of these days were very similar. There was as much chaos in meeting cancellations and scheduling—our third partner from Minnesota had not shown up, so our Minnesota meetings were cancelled (which I’d been excited about, having spent the last 4.5 days in Minneapolis-St. Paul, and having learned tidbits about the representatives from my cousin’s girlfriend—including the classic line “Tina Smith is low-key my hero”). Gary and I stopped in to two of them anyways (sadly not Tina Smith’s office!)—why come halfway across the country to not accomplish what we set out to?
Between my group and another I connected with at the end of the day from New York, we spoke only to assistants, as many of the Congresspeople and Senators themselves were in votes. While a much smaller group on Parliament Hill last year, I think there was a greater proportion of us who got to meet the elected official themselves. I did advocate for the family from New York to have a meeting scheduled in the home office with their representative: this family is pushing for epinephrine auto-injectors to be available on airplanes after the son, Gianluca, experienced an unknown anaphylactic reaction to cashews on an airplane earlier this year. Luca is fortunately alive today thanks to a nurse on board and two passengers who offered their EpiPens. At ten-years-old, Luca is already a fierce advocate. Details were exchanged so the family could arrange to meet their representative at home.
The main contrast I saw were the pure number of “asks” we went into our fifteen-to-twenty minute meetings with. The duration of meetings were the same as at home, but for the Asthma Canada meetings we went in with two core asks—clean air/clean energy and a national pharmacare (drug coverage) strategy. These meetings in the US had us all feverishly consulting papers and taking notes, with 8 key asks, most relating to bills already in the House or Senate!
Your story matters in creating change
When I wrote my first article in May 2017 about visiting Parliament Hill, It was my first time “on this beat”. Since then, I’ve met my Member of Parliament (MP) and told others to write to and meet with their elected representatives (and to VOTE!). In May, I told my MP, Daniel Blaikie, face-to-face about why Canadians--specifically, Canadians like me--need national pharmacare access. Mr. Blaikie tweeted at me in October, and I tuned in to the discussion on pharmacare, where he told my story in the House of Commons. I am just one person with one story: if it changes the way one or two representatives vote, that can be enough to tip the scales.
If you want to see things change, find your allies and tell your story. If you feel your elected representatives aren’t your allies, tell your story anyways—and as President Obama repeatedly said: “Don’t boo. VOTE!”
Your story matters: you are the one with the power to tell it.
Disclosure: My expenses on the Washington, DC portion of the trip were entirely covered by the Allergy & Asthma Network and their industry partners. I was not required nor requested to write about my experiences. (But lets be honest, if someone invites you to a Blogger Summit, chances are you’ll write about it.)
How does your asthma change with the seasons?