Dr. Steven traveled to Washington, DC yesterday for Allergy & Asthma Action Day on Capitol Hill to advocate for patients with allergies and asthma on behalf of the Allergy & Asthma Network, the nation’s largest patient advocacy group for people who suffer with these disorders. The day started off with three people explaining the importance of confronting these issues. A ten-year-old boy was brave enough to come to the mic to explain that he was unaware of his allergy to cashews until he ate one on a plane on the way back from vacation; auto-injectable epinephrine is not part of standard airplane emergency medical kits yet, and if two moms who had autoinjectors with them hadn’t come forward when asked, he wouldn’t be here with us today. A mom of six explained how severe the consequences of poor access to care can be; her 17 year old son did not get appropriate evaluation of his asthma, nor was it made clear to her that the medication he was prescribed did have a small risk of behavior changes and depression until six months after he took his own life. Lastly, a widow explained that several months after her non-smoking, 46 year old husband was diagnosed with lung cancer and had a suppressed immune system from chemotherapy, he was exposed to contaminated water in the hospital and even though his cancer was responding to treatment, he died from pneumonia due to Legionnaire’s disease.
Despite the degree to which science has advanced, about 12 Americans on average die each day of complications of asthma and allergies. So the Allergy & Asthma Network and its supporters, including Dr. Steven, mobilized today to advocate for various issues to improve the lives of people with these afflictions. Although he was not able to meet personally with any members of Congress, he met with the Healthcare Legislative Assistants for both our Wisconsin Senators and Representative Jim Sensenbrenner, as well as two members of the Minnesota delegation.
Talking points he made, as summarized in the two Facebook Live videos he broadcast, included:
- Providing auto-injectable epinephrine and other lifesaving medications on airplanes
- Promotion of the bill already passed by the House that provides patients with a pathway to more effectively appeal formulary decisions to their insurance carrier. Often the medication that works best for a patient gets substituted for one that the insurance company claims is equivalent, even though the real reason for the switch is for them to save money at the expense of the patient’s good health
- Address the issue of insurance companies switching between biosimilars - which are similar, but not identical. Insurers think they are all the same, but there are clearly some that work better for a given patient than others
- Continue funding the CDC’s National Asthma Control Program, and the EPA’s initiatives that address environmental triggers for asthma in communities and schools
- Improved food package labeling that makes it easier for those with food allergies to avoid foods that contain allergens for them, and to include sesame on these labels, as it is becoming more and more of a significant food allergen
- Block current efforts to enact unreasonable restrictions on how allergen extracts are prepared for allergy shots; the proposed action would essentially make allergy shots unaffordable for all Americans
- Better coverage for telemedicine, when appropriate, to improve access to care for those who would otherwise find it nearly impossible to travel to a physician’s office for care
Lobbying for change on a national level is difficult, but Dr. Steven was encouraged by the fact that all of the staff members with whom he met yesterday seemed genuinely interested in his perspective and what he had to say, and every one of them actually took notes during the half-hour conversations! Here’s hoping that all of our collective efforts will help us work toward positive change!