We’ve introduced you to Alexandra and Catherine, our summer Policy interns. They have been busy in D.C., attending Congressional hearings and learning the ropes of working for a national organization. During their second week, they experienced first-hand the planning and execution of our fifth annual Patient Fly-In. Read their experiences through their eyes on how the day unfolded on Capitol Hill:
On June 12, I had the opportunity to advocate for the bleeding disorder community along with other members of the community. The purpose of our visit on the Hill was to address and discuss issues important to our community. Some of the issues include: the importance of having access to affordable and meaningful healthcare coverage, maintain federal Medicaid funding, the continuation of the ban on annual and lifetime limits, and to continue protecting people with pre-existing conditions.
Prior to arriving on the Hill, the HFA policy team held a training for the participants to further understand the issues we were to discuss with our Representatives and Senators. As an icebreaker, we went around the room to introduce ourselves and share what we hoped to gain from the experience.
I was immediately taken back by the strong voices of our community; from the children to the adults, everyone was so passionate about making a change in healthcare policy to not only benefit themselves but the entire community. I was impressed to see how compassionate the individuals in our community are and the passion they have to demand policies that support the bleeding disorder community. With that inspiration and motivation, we split into four different teams with constituents from the same geographical location.
The day of the Fly-In I was somewhat nervous, however, dressed in business attire I felt prepared to discuss our talking points that I had studied the previous night. Despite how often someone visits the Capitol or advocates at a governmental office, it is always a little nerve-racking to walk into a Senator’s or Representative’s office. This is when I remembered what Sarah Shinkman had shared at the Fly-In training. She mentioned that we are the experts of our own stories; our job was to share our own experiences and speak on why we are passionate about better healthcare policies. This is something that I kept reminding myself and other participants in my team to help calm the nerves.
After the first couple of minutes at our first meeting, our nerves went away. The legislative aides were receptive, and in support of the issues we presented to them. Once we began to share our stories, the meetings felt comfortable and genuine. Each meeting reminded us that we are not alone; in fact, we felt supported by the individuals who agreed with the policies that our community encourages. During each meeting, we had an opportunity to share individual stories that connect us to the bleeding disorder community, express our policy recommendations, and answer questions from the legislative aides.
As a member of the bleeding disorder community, the Fly-In holds strong importance to me. Unfortunately, I was not diagnosed with Von Willebrand Disease until the age of twelve, following a serious sequence of events that led the doctors to my diagnosis. Prior to my diagnosis, I struggled to live a healthy life, which created obstacles in my childhood. I do not want children to not have access to good quality healthcare, potentially living years undiagnosed. Personally, I’m a strong believer of how advocacy efforts can result in positive change. For that reason, it is essential that we share our stories, educate others, and advocate with the individuals who have the power to pass legislation.
I think at times it can be easy to feel discouraged and unmotivated to continue advocating for healthcare. However, we must remember that we must continue raising our voices, highlighting the needs of our community, and educating individuals who have an influence in policy-making. The Fly-In allowed me to get a glance of what the upcoming weeks at this internship will consist of and an opportunity to continue my advocacy efforts throughout the summer and beyond.
Alexa and I have been in D.C. for a few weeks now and I think I speak for the both of us when I say that we feel like we have really hit the ground running! On the twelfth of June, we participated in the Hemophilia Federation of America’s Fifth Annual Patient Fly-In. We teamed up with sixteen community members from ten different states to visit offices on the Hill and share our stories. The day was full of excitement and left us feeling stronger as a community and hopeful about future policy decisions.
As community members, we went through training together at HFA’s office to learn more about the healthcare discussions taking place on the Hill. We also took some time to practice sharing our stories by workshopping in small groups. This gave us a chance to get to know each other better and understand what we each bring to the table. Though we have varied experiences of living with a bleeding disorder, we share the same major goals. One of the benefits of advocating as part of a group is that we can speak to the many ways proposed policies may impact the lives of people with bleeding disorders. I can also say that it has been helpful to me to have the support of my blood brothers and sisters while building confidence in public speaking. We stand together to affirm and amplify one another’s experiences, as well as to advocate on behalf of those who could not be present with us.
In each meeting, there was at least one constituent of the Senator or Member of the House who could speak to the experiences of living with a bleeding disorder in their respective region. They were accompanied by community members from another state (or two) who also told their stories. In addition to sharing our personal experiences, we addressed relevant needs to ensure a good quality of life for our community. For example, in meetings with Members of the House, we discussed a bill which would help to protect patients with bleeding disorders being asked to undergo step therapy.
Step therapy is intended to reduce unnecessary healthcare spending. This process makes sense in some situations, but can be dangerous for people with chronic health issues like a bleeding disorder. Step therapy begins when an insurance company provides a list of available treatments, arranged by whether they are preferred by that company or not. For patients to change medications or have access to medication on the non-preferred list, they must first “fail” on a drug placed on the preferred list by the insurance provider. Unfortunately, there is no definition of “failure” in the bleeding disorders context. For someone with a bleeding disorder, failure could mean anything from a bigger bruise than usual to loss of life. The bleeding disorders community cannot afford to fail on a drug, because episodes of bleeding can have long-lasting negative effects on the body and directly impact quality of life.
The matter of step therapy is close to my heart because I have been through this process in my own lifetime. When I was first diagnosed with a bleeding disorder, I was prescribed lower-cost therapies because of my insurance company’s preference for these treatments. Unfortunately, they only helped with some of my bleeding symptoms and were ineffective during surgery, exercise-induced joint bleeding, or bouts of gastrointestinal hemorrhaging. I have joint damage that impairs my mobility and will affect me for the rest of my life because I was denied access to the therapy which directly addresses my inability to form a blood clot. During our meetings on the Hill, I shared my story with legislative staff to impress upon them the potential outcomes of having to go through step therapy as a person with a bleeding disorder.
The Restoring the Patient’s Voice Act (H.R. 2077)* will implement some “guard rails” that will help our community when it comes to step therapy. This bill, introduced by Brad Wenstrup, a Congressman from my home state of Ohio, would amend the Employee Retirement Income Security Act of 1974 and establish an exception from step therapy in cases where a preferred treatment will not be helpful to the patient. The bill currently has 67 cosponsors and would empower physicians in making a case to an insurance company as to why a patient has been prescribed a particular drug, even if it is on a non-preferred list.
After last year’s heated ACA debate, this year has been a bit quieter for our community. However, that does not mean we should become complacent. It’s important to keep showing up, build and maintain relationships, so that when healthcare is back on the table (sometimes suddenly) we can make sure that our elected officials are keeping us in mind. During meetings with Senate offices, we emphasized the necessity of preserving certain components of the ACA. Protection for individuals with pre-existing conditions and the ban on lifetime and annual coverage limits are two such elements of the ACA that have been extremely beneficial to the bleeding disorders community. We also spoke about the potential threat to our community posed by “skinny plans” or short-term plans, which would draw healthy people away from the greater risk pool.
Overall, we had a very positive day. Staff were receptive and engaged with us by asking questions about our experiences as individuals or as a community. Some of the people we spoke with had heard of hemophilia or had a general idea what a bleeding disorder is, but were surprised to learn about the complexities of life with a chronic condition. Because we are a community dependent upon access to healthcare, our stories are an important contribution towards having a well-informed discussion about health insurance in the United States. In recent years, stories from our community have been used by members of Congress to give real, human examples in an otherwise numbers-driven debate on health insurance. While the numbers and data are important for making well-informed and effective decisions, it can be easy to lose sight of the real cost of barriers to care. That’s why it’s so important for us to stay informed, be present, and speak up about our situation.
*For more information about H.R.2077 https://www.congress.gov/bill/115th-congress/house-bill/2077