Last week H.R. 4701 (The Tick-borne Disease Research Transparency and Accountability Act of 2014) passed the house. The bill is also known as the Gibson Bill, after the bill’s author, New York Senator Chris Gibson.
Per Lyme disease.org:
H.R. 4701 forms an interagency working group consisting of federal agencies and non-federal partners, including experienced Lyme physicians and patient advocates with a broad spectrum of scientific viewpoints. The working group is tasked with ensuring coordination among federal agencies to maximize research priorities. – See more at: http://lymedisease.org/news/lyme_disease_views/house-passes-lyme-bill.html#sthash.vqbgBL2C.dpuf
Read more here:
- NEWS: Immediate action needed on House Lyme bill, Lymedisease.org
- Proposed Bill H.R. 4701, as amended
- NEWS: Gibson amendment on Lyme disease passes House committee, June Lymedisease.org article
Headed to the Senate
Hopeful advocates of this legislation are encouraged by requirements to give patients and lyme-experienced physicians an unprecedented formal seat at the table through inter-agency collaborative working group to ensure inter-agency coordination of reserach priorities. The legislation also intends to provide funding for research. This snippet is purposefully brief, as far better justice is done in the following articles.
H.R. 4701 requires the Secretary of Health and Human Services to consult with the working group to submit a strategic plan to Congress within three years that includes benchmarks to measure progress. The plan must include a proposal for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms, infections, and co-infections. – See more at: http://lymedisease.org/news/lyme_disease_views/house-passes-lyme-bill.html#sthash.f1f8ggvK.dpuf
Read more here:
- NEWS: House passes Lyme legislation; now on to the Senate, Lymedisease.org
- Lyme Victory in the US House of Representatives
Gibson Bill Press Release
Per Press Release:
“Passage of this constituent-driven bill represents a real victory for Lyme sufferers and the people of Upstate New York,” said Congressman Gibson. “As Lyme becomes even more prevalent in the Hudson Valley and spreads to new regions, it is imperative that the federal government adopt a more aggressive strategy to improve detection, treatment, and prevention of these tick-borne diseases. Our legislation requires action from the research community, and it brings together stakeholders from across the Lyme community.”
Read more here:
Note-Worthy Testimony (Chris Smith-NY)
I hope my Congressman voted in favor of HR 4701. It feels very rare to be acknowledged publicly, let alone advocated for, as Lyme disease patients. I have much respect and gratitude for this politician’s words and his position. Kudos to Lymedisease.org and Lyme Disease Association, Inc. (LDA) for getting the word out so far so fast.
“I would respectfully submit that these are symptoms of something that has a root cause.”
Co-Author Sentiments (Chris Gibson-NJ)
Per article linked below:
“The bill before us begins the process of helping Lyme patients by establishing an interagency Working Group on Lyme disease and creating a strategic plan to guide existing federal Lyme disease research and treatment programs,” said Smith calling for passage of the bill. “This Working Group will be required to comply with FACA, the Federal Advisory Committee Act, which ensures decisions are made in an open and transparent manner and allows for greater public input in the decision making process.
Read more here:
What’s Needed Now
According to my own Facebook observations, it appears that many people (including myself) contacted their Congressmen requesting support for this proposed legislation last week. If you’ve done this already, it may be worth following up with additional detail as you read and learn more.
For me, this will entail greater specificity regarding criteria for selecting working group members, because if IDSA physicians (rather than physicians that treat Lyme patients), for example, were selected, history could repeat itself with a ‘stacked’ group under the guise of transparency.
Next is to read up and to contact your representatives in advance of the proposed bill going before the Senate.
Not all Lyme advocates are in favor of the bill, and from what I’ve gleaned anecdotally, some fear that it a) won’t do enough, b) may compete with other on-going strategies, suites, or efforts, and/or c) may repeat past biased and damaging efforts under the guise of transparency.
I’m certainly not advocating Facebook pages as a primary go-to for political information, but a few pages in particular are likely to continue to provide articles and updates. Comments on these updates can be useful in pointing toward alternate views and concerns and in many cases include references and useful links. These include, but are not limited to Under Our Skin, Lymedisease.org, and Lyme Disease Association.
You can also track this bill at the following location:
As of the writing of this post, the prognosis for enactment of this bill at the above link is 33%.
Edit/Addition: Wednesday, Sept. 17 Lyme Light Radio show on this topic with guests ~ http://www.transformationtalkradlo.com