Oh, the Power of ONE. Generally people don't believe it. They get discouraged. Yet, the Power of ONE is incredible. You may have seen the movie, the Power of One (1992). The Power of One is an intriguing story of a young English boy named Peekay and his passion for changing the world.
I have been reminded of its Power a multitude of times over the past few weeks and months. The ability of one person to make a difference is quite fantastic – especially in this mass culture where we are all expected to blend in and “stand in the corner and wear beige”. But the Power of ONE is tremendous and is as colorful as the prettiest spring flower.
For weeks/months, IDF has been working with Congress to get some relief on the Medicare IVIG Access issue. The only way to get any health care bill to pass this year is to make it part of the health care reform debate. Senator Kerry has been our champion in the Senate and has filed a floor amendment to establish a demonstration project over the next 3 years that will allow Medicare to pay for the necessary nursing services for IVIG in the home setting. But how did Senator Kerry become a champion? The Power of ONE. A Massachusetts parent of a child with PIDD called Senator Kerry’s local office and told her story to a staff person. The staff person listened. He was invited out to see an infusion. He went. He talked to Senator Kerry. It was the beginning of a relationship and the building of a champion for the Medicare Patient IVIG Access issue.
After Senator Kerry decided to file an amendment to the health care reform bill, IDF looked for co-sponsors. One of IDF’s volunteer advocates from Oregon, attended IDF’s 2009 Advocacy Day, and alerted the staffer in Senator Wyden’s office to the amendment. He was careful to maintain occasional contact. The IDF advocate asked Senator Wyden to be a co-sponsor of the Kerry amendment. He consented and now the amendment is referred to as the Kerry/Wyden et.al. amendment.
In Rhode Island, an IDF volunteer advocate used her contacts with Senatorial staff members with whom she met on Advocacy Day to persuade both Senators Reed and Whitehouse to co-sponsor and support the Kerry /Wyden amendment. Senators Reed and Whitehouse from Rhode Island became co-sponsors. And the same volunteer requested a meeting with the Governor of Rhode Island to inform him of primary immunodeficiency diseases. She met with him recently and had a productive meeting that could lead to Newborn Screening for PIDD in Rhode Island.
Another IDF advocate established a relationship around PIDD with a State Senator in Louisiana. The State Senator arranged for our volunteer advocate to have dinner with the Governor to educate him on PIDD.
A patient in New Mexico treated with IVIG in the home will have to join Medicare in January and will not be able to continue home infusions every four weeks. The nearest place to receive his IVIG is a 6 hour drive away. His infusion lasts 8 hours. Realizing that he will not be able to handle the 18 -22 hour ordeal, he contacted Senator Bingaman local office and told his story. The Senator’s office is working to help him find a way to continue home infusions. The Senator is also looking to support the Kerry/Wyden amendment.
There are many examples of individuals taking small steps that greatly impact the larger world. Thank goodness IDF has many people who exhibit the Power of One.