To log on to my computer and find out the first major federal lyme bill has just passed the house is giving me hope for not only for my future but my children's future.
I will post a link to the bill at the end of this blog. I will also quote the Lyme Disease Associations press release as they were instrumental to getting this bill on the house floor. There is a lot of debate in the lyme community about this bill and if it's enough or if it will work as it's intended. I will not discuss that here.
What I will discuss is why ANY bill concerning lyme and including wordage like, "chronic or persistent condition" is something to cheer about. It's progress!!!
Why am I cheering?
-There are others out there fighting for me and my family along with all the other lyme sufferers who are to sick to fight for themselves.
-Our government's attention is slowly being drawn to the fact that lyme can develop into a chronic condition and that there are millions of people in our country who are sick.
-I am sitting here in a hotel, miles from home, seeking treatment for a disease that I can't get treated for in my own state. Nobody should have to be this sick and travel this much just to get the correct treatment.
-I am paying out of pocket for four people to see lyme doctors. How is that ok on any level? I don't blame the doctors, I blame the insurance companies and medical boards who make it to difficult for these doctors to bill insurance. Even putting them at risk of loosing their medical licence. Tomorrow I will be spending $1200 on two appointments. Every month we will be spending $800 on doctors appointments alone. The Stanleys are still trying to save the funds to pay for their inital appointments. So far only Emma has seen a lyme literate doctor. (Both she and Ellen have been tested and are positive. Chris is last on the list to be tested) They are like the thousands, the millions who are sick but can't afford to go to a lyme doctor.
-I am on pins and needles that the test I am paying a lot for my daughter Jenna to have will come back CDC positive. This is the only way we have a hope of her insurance covering at least some of her IV antibiotic treatment.
-Jenna is engaged. Chelsea is in highschool. They have so much they want to plan for but the next few years are up in the air where we don't know what their health will be.
-Jenna, Chelsea, and Emma are slowly coming to the realization that this is something they will have to live with their whole lives. They have to worry about when they have their own children because of the possibility of passing it down to the next generation. These worries are intensified by the knowledge that seeking treatment is hard, expensive, and there is no guarantee of a positive outcome.
-As parents we worry about our children needing medical attention and having to take them to the emergency room only to be lectured about lyme not existing or even worse, being reported to CPS because of all the medication the children are on.
-The children are embarrassed to tell others they have lyme because it is so misunderstood. Jenna said it clearly today. They have years of being told they just need to toughen up, try harder, not complain about every symptom. When they did go to the doctor they were told there was nothing wrong. It's hard to now give yourself permission to be sick. That when she allows herself to be sick she feels guilty for not trying harder to act healthy. Can you think of another serious condition where this happens?
-We always have a fear of not getting well because we can no longer pay for our medicine. Chelsea just had her new med rejected by the insurance. This as she missed school today because she is sick. I don't have $300 to pay for it. Not when I need to buy probiotics and multiple supplements and herbal treatments that we all need to be on. I will be fighting with the insurance company next week, because I am so healthy and have nothing else to do with my time......(insert sarcasm)
All of these reasons, plus many more, is why a simple bill passing the house has made me emotional. We need to have hope that our children will have a better future then what we have had.
From The Lyme Disease Association:
The Lyme Disease Association, Inc., LDA, is pleased to announce that the Lyme bill, HR 4701 - “Vector-Borne Disease Research Accountability and Transparency Act of 2014” as amended, was discussed on the floor of the U.S. House of Representatives today, September 9, and passed the House by voice vote.Gibson
“This legislation is truly constituent-driven and represents a significant step forward in what has been an extensive process,” said Congressman Gibson. “For the past few years, I have worked with physicians, patient advocates, professional researchers, patients and their families throughout New York and the United States on a bill that focuses solutions. I want to thank Pat Smith and other Lyme advocate leaders for their significant and persuasive engagement and unyielding commitment to change the direction of U.S. policy to bring solutions and relief for our chronic sufferers. This bill is dedicated to those patients who have been ill for years, at times seemingly without hope, wondering if anyone in Washington was listening or cared. We hear you. We do care, and today we passed this legislation to help you get better.”
The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress to include "a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections; ... a plan for improving diagnosis, treatment, and prevention."
The bill also specifies that the Working Group established shall meet at least twice each year and that it shall be subject to the Federal Advisory Committee Act (FACA), which requires transparency in operations of the Working Group. Under FACA, meetings must be publicly announced, open, and provide an opportunity for divergent viewpoints. Minutes, as well as other records and reports must be made available to the public. FACA also stresses the importance of having a fairly balanced membership in terms of points of view represented.
“This bill provides Lyme patients with a much needed voice in the shaping of public policy in Washington, DC, in a transparent setting. All aspects of the Lyme disease question including, chronic Lyme, will be examined, with participants of differing viewpoints coming together in discussion with the same goal in mind, finding research pathways which will help find a cure for Lyme disease and prevent new cases of all tick-borne diseases,” said Lyme Disease Association President, Pat Smith.
The LDA led a nationwide campaign to support this patient protective legislation and organized a letter signed by 154 Lyme & tick-borne disease groups and others that was sent to all members of the House Energy & Commerce Committee.
The LDA thanks Representative C. Gibson (NY), bill sponsor; original co-sponsors C. Smith (NJ), Courtney, Peterson, Wolf, Barletta; and other bill sponsors and Representatives who supported the bill; the Energy and Commerce Committee; and leadership of the House. Also, we appreciate the favorable remarks about the bill on the floor after Mr. Gibson spoke, from Mr. Maloney of NY, and Mr. Smith of NJ.
We also thank our partner groups nationwide who were instrumental in the effort to pass this legislation, and all Lyme groups across the country, patients, and other groups who worked on this effort. The next step for the bill is to go to the Senate, where we hope it will be given prompt consideration.
See the bill for yourself at http://docs.house.gov/billsthisweek/20140908/H4701_SUS_xml.pdf
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