NEWS: House committee passes federal Lyme bill
Legislation that would aid in the research of tick-borne diseases has passed the House Energy and Commerce Committee. Sponsored by New York Congressman Christopher Gibson, it now goes to the full House for a vote.
The bill sets up a “working group” to meet with the Department of Health and Human Services in developing a strategic 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.”
The make-up of that working group became a sticking point for the committee. At one point, Gibson’s bill was amended to exclude patient representatives or Lyme-treating physicians. The Lyme community viewed the change as dangerous for Lyme patients.
Pat Smith of the Lyme Disease Association led a nationwide effort to restore patient-friendly language to the bill. A letter signed by 154 Lyme-related groups was sent to the ECC committee members, and individuals were encouraged to contact committee members as well.
According to the LDA’s Smith, “This bill provides recognition that research is needed for Lyme disease and all tick-borne diseases and provides for a structure where the ultimate stakeholders, Lyme patients, will finally have a voice at the table in a transparent setting. Additionally, the inclusion of ‘chronic or persistent infection’ finally allows that to be more fully examined as part of the federal research agenda.”
Link to legislation passed 7/30/14, HR 4701 July 23 version
http://docs.house.gov/meetings/IF/IF00/20140729/102597/BILLS-113-HR4701-P000373-Amdt-3.pdf
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Bill History
Yes!!!! Yes!!!
Set up a group to look realistically at Lyme, a group which will consider carefully input from longterm Lyme patients and doctors.
Charles Buchanan
Please please get this and more passed to help those of us with Chronic Lyme ! We are in the thousands suffering daily!
It has been a long time to realize this is a real problem. Many are infected and are not aware they have this horrible disease. Medical Professionals must take this seriously and educate themselves. One or two treatments may be enough if diagnosed in time and correctly.
I was treated (after diagnosed) June of 2013. Had a horrible summer/fall. I am still having effects today, not as severe but none the less.
It is going to take continued research and development and on going awareness. Does it ever REALLY go away after treatment?
Thank you for this legislation and certainly will improve the need for action.
Mike Milner
Patients with borreliosis and other co-infections, whether still infected or not, have real and disabling symptoms that must be addressed by clinicians. It’s NOT ok to say, “I dont’ know about it,” “I don’t believe in it,” “We don’t treat it here,” or “You are too complicated.” This would not happen in other chronic illnesses, but somehow it’s ok and allowed in our case. “Where did medicine go?”…Where did listening, respect, trust, humility, learning, and open-mindedness go in medicine? And why are we seen as political pawns instead of patients suffering in need of care? Shameful, unprofessional, and frankly criminal attitude. And in the meantime, we are ill, getting worse every moment, unvalidated, ignored, abused, denied access to care. It’s time for medicine to rise to the occasion, to remember that it’s both a science and an art, and that patients are not enemies, dumb, not to be trusted, seeking attention or drug-seeking. We are sick and we are real, just like our symptoms and suffering are real. Our illness does not only affect us as individuals, but our loved ones, and causes disability denying us the ability to become productive members of society. It’s a public health issue, a society issue, a health issue. It’s time for all to leave egos, opinions and personal beliefs behind, and work together toward a common goal – to provide access to health care to people with Lyme…Long overdue… It’s unprofessional, unethical, abusive, illegal and criminal to deny care! Remember when medicine did not believe in germs causing disease?, not recognize cancer?, did not believe in AIDS?, deny care to syphilis patients? It feels a bit like going back to Medieval times, when healers and magicians were one and the same. We matter, we are real, and our symptoms are real and disabling. We have the right to have equal rights as others, to have access to care. We are American citizens.