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Yes, You Can Make a Difference

Yes, You Can Make a Difference

If there are days when you step away from the news feeling discouraged about this country, I have a solution: Plan a trip to Washington, D.C. and spend a day on Capitol Hill. You will be reminded that it is our capital and our nation; you cannot help but relish the accessibility of the United States government.

Last week I participated in Lupus Advocacy Day in Washington, an event that called for people from different areas of the country to come and discuss with elected officials their hope that more money be devoted to lupus research and education.

Lupus is a chronic, complex, and disabling autoimmune disease that affects more than 1.5 million Americans, 90 percent of them women of child-bearing age. Many of them are minorities.

Lupus is so difficult to diagnose that most people suffer overt and troubling symptoms for 3-5 years before they are diagnosed. Their diagnosis finally occurs when they are in crisis–a hospitalization that need not have happened if the disease had been recognized and treated earlier.

Just as there is government money going to cancer research, there needs to be that sort of investment in difficult-to-diagnose illnesses like lupus because they are the kind of health “puzzles” that keep national health costs high.

The plan for Lupus Advocacy Day involved members of our 40-member group dividing up by Congressional district and visiting the staff person who handled health issues in the offices of our areas’ respective elected officials.

We met the day before and reviewed with the organization what we were asking. (If you’re interested in our specific requests, I list them at the end of the article.) With three other New Yorkers, I visited the offices of U.S. Representative Nita Lowey, and Senators Charles Schumer and Kirsten E. Gillibrand. In each case, we were met promptly by a staff person who listened carefully to our concerns. Jean Doyle, legislative director for Nita Lowey’s office was particularly impressive–not only did she know a lot about lupus, but she knew the health care bill inside and out.

As we worked our way through the day, I was impressed by several elements:

While going with an organized group has its advantages (like someone else making the appointments) what was clear from the day and from the staff people, is that they are there to represent the People. You just need to take the initiative and let them know how you’re feeling.

If you decide to go and would like to visit a Congressional office, call ahead and tell them the one or two things that you would particularly like to discuss (don’t call with a 20-item list). The receptionist can then direct you to the person who is most knowledgeable in your area, and you can work out an appointment with that person. If you arrive without an appointment, a staff person will likely speak to you for a minute but it is not ideal. (Your chances of saying hello to your Congressperson are higher if you are from a low population state, though we were surprised and delighted that Nita Lowey stepped in to our meeting to say hello.)

One Congressional spokesperson noted that a lot of people can’t make the trip to Washington but that all Congresspeople have office staff in their local districts. “Calling the local office and talking to them or even scheduling a meeting there can be just as effective,” notes a spokesperson for Nita Lowey. Your opinions do matter.

The D.C. offices are busy places, and we were told meetings would last from 5-15 minutes. Many of the meetings are held standing in the hallway because of a lack of office space. But who can complain? Citizens in countries throughout the world would give a great deal to have this type of access to those in charge of their governments.

If you’re like me, you’ll leave knowing that despite the shrill tones and heated debates–and lack of civility–in some of our ongoing political discussions, this is still the greatest country in the world.

Now my personal obligation is to do what I can to help keep it great.

Our Requests regarding Lupus:
1. Last year, $1 million was devoted to start a nationwide lupus education program for health professionals. We asked that another $1 million be allocated for this education program to continue, which will help keep down medical costs by getting more cases diagnosed before a patient is in crisis.

2. We asked that the House and the Senate allot as much money as possible for biomedical research for this year. This was not specific to lupus, but just to affirm that we want the government to look for answers to all difficult illnesses.

3. We wanted Congress to know we support health care reform, particularly the aspects that do away with the current practice of not insuring people with pre-existing conditions and capping lifetime benefits. These are two commonly agreed-upon problems that need to be rectified for any person with a chronic illness, including diabetics, people with MS, or any other long-term disease.

For more information on lupus: www.lupusresearchinstitute.org




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