Washington Days: Meeting Face-to-Face with Elected Officials
By Michelle Putnam, Associate Director of Research and Advocacy
Each year, the National Hemophilia Foundation hosts Washington Days. Advocates from across the United States gather in Washington, DC in order to visit their elected officials and advocate for legislation that impacts people with bleeding disorders. In an age when people can voice their grievances and beliefs on Twitter and Facebook, making a trip to Washington, DC may seem like an outdated way of advocating. But, as our team members learned, meeting face to face with an elected official is the best way to make an issue real. The connections we made this year with our Georgia delegation will go a long way to ensure that people with bleeding disorders are represented. This year our team members included Louis C., Alex A., Jesus B., Katie K., Brittany N., Sidd D., and Katie R. Also attending were staff members Michelle Putnam, Jeff Cornett, and Michelle Fitzwater.
This year we advocated for House Bill 460, also called the Patients' Access to Treatment Act, which caps the amount insurance companies can charge people for drugs on a specialty tier. Insurers usually classify drugs into three categories, or tiers: generics, preferred brand name drugs, and non-preferred brand name or specialty drugs. In recent years, though, insurers have introduced a fourth classification of drugs, called specialty tiers, which requires a patient to pay a percentage of the drug rather than the standard copay. Sometimes, these coinsurance rates are as high as thirty percent, leaving some people on the hook for thousands of dollars a month in out-of-pocket costs.
Specialty tiers do not impact people with hemophilia whose drugs are covered under the medical benefit (at least for now). But people with arthritis or multiple sclerosis, who rely on drugs classified into a fourth tier, sometimes have to choose between paying for their medications or paying their mortgage. HR 460, which is a bipartisan bill, would require insurers to cap the amount they charge for specialty drugs at the same amount as they charge for drugs on the third tier.
This bill is not new. In fact, we advocated for it during last year's Washington Days. The bill has 90 cosponsors, but remember, the House of Representatives has 435 members. Even though we do not have enough votes to pass the bill this year, we are still making sure that our Congressmen in Georgia know that this is an important issue, and one that should be addressed. Four Congressmen that we met with had already cosponsored the bill: Representative Hank Johnson, Representative David Scott, Representative Sanford Bishop, and Representative John Lewis. We made sure to thank them for their support.
As always, Hemophilia of Georgia received a warm southern welcome from our Congressional delegation (free peanuts in every office!). We met with Representative Tom Graves, who made time to say hello even while meeting with another group. Representative Hank Johnson and Representative David Scott sat down with members of our team, reminding them that advocacy does make a difference. Representative John Lewis made sure to say hello to us while on his way to a meeting and allowed us to tour his office, which contains memorabilia from his work during the civil rights movement. We met with both Senate offices, and staff members under Senator Saxby Chambliss and Senator Johnny Isakson both committed to taking a full look at HR 460 and possibly supporting similar legislation if it is introduced in the Senate. After a full day of advocating and walking through the marble halls of the Congressional office buildings, our team had accomplished what we set out to do – educate lawmakers on bleeding disorders.
Washington, DC is home to a number of Smithsonian museums, and after one last advocacy training on Friday morning we took some time to walk the National Mall and visit the Museum of Natural History, the Air and Space Museum, and the American History Museum, which is fondly known as “America's Attic,” because of its treasure trove of cultural artifacts. After a few hours on our feet, we relaxed on a trolley tour through the district and into Georgetown, catching glimpses of history along every turn.
Saturday we spent the morning in Arlington Cemetery, where we visited John F. Kennedy's gravesite and the Tomb of the Unknown Soldier. We watched the changing of the guard ceremony and were also fortunate to be able to see a wreath-laying ceremony. We then walked through the many memorials Washington has to offer (several team members took impressive 'selfies' with the statue of Abraham Lincoln), the newest being the Martin Luther King, Jr. memorial, which was completed in 2011. We saw as many sights as we could before our trip home Saturday evening, but Washington, DC is a city that offers a never-ending glimpse into history.
Fortunately, our advocacy work doesn't end with this trip. The goal is to educate lawmakers on bleeding disorders, and we hope this trip helps create future leaders in the bleeding disorder community.
