House passes 21st Century Cures Act with provisions for Lyme
The US House of Representatives today overwhelmingly passed the 21st Century Cures Act (HR 6), bipartisan legislation that will boost funding for biomedical research at the National Institutes of Health (NIH), and make reforms designed to bring new therapies and treatments for rare diseases to market sooner.
New Jersey Congressman Chris Smith, who has carried Lyme disease legislation in the past, praised the new bill for including provisions geared towards helping people with tick-borne illnesses.
Specifically, Section 4081 of HR 6 establishes an Interagency Lyme and Tick-Borne Disease Working Group tasked with monitoring federal activity on Lyme and providing recommendations to guide Lyme disease research and treatment programs. Expanding input on research and treatment by including Lyme patients in the process will open new opportunities for medical breakthroughs.
“The Lyme working group established by this bill will ensure that experts and patients are included when decisions are made that affect the Lyme community,” said Smith, who first authored legislation to create an advisory committee on Lyme in 1998. “Lyme patients have suffered for too long because of a lack of medical understanding and comprehensive treatments. This bill ushers in a new approach.”
Smith is chairman of the House global health subcommittee, where he held the first ever congressional hearing on Lyme.
The 21st Century Cures Act was developed through many months of bipartisan effort by the Energy and Commerce Committee and passed the House Friday by a 344-77 vote.
- July 10, 2015 at 4:17 pm
Ty, just plz help me.
- July 10, 2015 at 5:49 pm
Thank you! My husband needs your help. He has been suffering with this disease for 6 long years. Please don’t move slowly!
- July 10, 2015 at 6:45 pm
What can you do NOW for us?
- July 10, 2015 at 11:16 pm
Life is unbearable while not one person is helping me. I lost everything and just get sicker and weaker and my thinking is declining.
Please help us. http://www.caringbridge.org/visit/slippingaway
- July 11, 2015 at 1:52 am
It’s a start. Depends on which “experts” they put on this working group. Are they going to include LLMDs or will it be the same kind of folks who are on the IDSA board. Will they include patients who had/have difficulty getting diagnosed and treated? If this group comes up with ideas that support the existence of chronic Lyme, will it make any difference if the IDSA, CDC, doctors and insurance companies continue to ignore it.
- July 11, 2015 at 6:25 am
A different version of the House bill, which actually has more provisions that protect the interest of Lyme patients has been introduced into the Senate by Senator Richard Blumenthal (D-CT). If both bills get passed then there will be a conference to sort out the final language.
Action Alert from the Lyme Disease Association (LDA) (see link below): “Contact your US Senators today and request their support for 21st Century Cures with the inclusion of Section 406, the Lyme language.”
- July 11, 2015 at 10:41 am
Now to get the CDC, IDSA, and ILADS to comply
- July 26, 2015 at 10:42 am
- July 11, 2015 at 12:18 pm
TY. From healthy to disabled when I went undiagnosed for 4 years. My lyme doctor has given me back life though I’m still in healing stage & struggling. I will never understand why doctors kept telling me I was depressed. I never had a depressed bone in my body until I got sick. Or why I have spend $36k of my own money to get better when I have insurance.
- July 19, 2017 at 12:32 pm
Sonia, I agree with you! I was a healthy person until I was bitten by a tick. I thought I was covered for every health problem by Medicare, Blue Cross/Blue Shield, GHI, SHIP and a AARP/Met Life Long term health care policy. All premiums were paid for years! Was DECEIVED! Paid out of pocket $20,000 for care, was told I would be reimbursed. NOPE!!! Have been receiving collection calls from lawyers and collection agencies. I am refusing to pay! I never was a “depressed” person. Let’s figure why I am depressed now?? No longer can pay for treatment. I did not engage in any behavior which caused my illness. Why am I being punished and penalized for something I had no control over? I am “sick of being sick”. No matter how I try to gain back my past life, I am limited. SOMETHING HAS TO BE DONE! I don’t think we need more “research”. I want ACTION and insurance coverage!
- July 11, 2015 at 11:00 pm
How can I become a representative Lyme patient for this process?
- July 12, 2015 at 4:59 am
a couple of good books are by Meg Wolff, “Becoming Whole” and Joyce O’Brien, “Choose to Live.”
- July 12, 2015 at 8:11 am
My daughter has suffered from Lyme since she was 15years old and is now 42. Now that’s a long time with devastating body effects. Being told she was crazy etc.
etc. by Drs. Nice that bills are being passed but will the medical associations in each province actually teach Drs.and medical practitioners that Lyme disease does
exist and put forth the the proper equipment for testing. That is the issue now for new tick bites and infections. To actually accept and treat the disease which is really simple.
- July 13, 2015 at 4:39 pm
A Great start. Our family and children have suffered too long. Let the research begin, so we can get the much needed research to start. Many blessings and hugs for all the hard work to families, friends and those up on the Hill. Politics isn’t easy and getting our voice heard these days seems more challenging, but I am praying for breakthroughs.
- July 13, 2015 at 5:24 pm
The challenge with this bill, while a great step in the right direction, is that they will no doubt focus on DRUGS as cures and treatments instead of herbs and the like.
- July 13, 2015 at 11:52 pm
This has been a nightmare for my family. My sons had to quit University for treatment. My husband retired early and I have developed seizures and cognitive and motor issues. Visits going to so many specialists and no clue. How much is this really costing the system and the individuals. Mind boggling. Show compassion for the suffering as time is of the essence.
- July 14, 2015 at 2:37 am
Thank you for this, yes please help. We are barely getting by. We don’t qualify for social security, we don’t qualify for treatment, we don’t qualify to go to the doctor and speak about our condition. When you do they release you for fear of loosing their license by all of you in congress. This didn’t start by one doctors negligence acrossed the country, no it came from the top. This is no different than the unethical killing of so many african american families with syphilis. This time everyone (no matter what race) can die from this horrific disease. This government doesn’t tell people that more people are dieing now than born. So, the fake altered wheat, corn, is a money maker from one of their own who will always have the hands in for more money. This bill is helpful, probably not. It doesn’t guarantee any help, just a bill for people to contribute. We’ve all seen this before. Amazed President Busch has been given so much treatment while the rest of us suffer to get diagnosed. It isn’t difficult to diagnose,. There are too many people getting sick, especially your killing our kids.
- July 14, 2015 at 4:07 am
From LymeDisease.org, “Now the bill goes to the Senate. Use our easy “Voter Voice” tool to send a message to your senators, urging their support.”
- July 15, 2015 at 7:13 am
My Niece is 34 yrs old has 4 kids and is practically bed ridden walks with a cane when she can get up she has sores all over her head and has horrible mood swings and can get no help because she cant afford it! She and all the others need help desperately!!
- July 15, 2015 at 11:25 pm
THANK YOU;;BEEN DEALING W SEVERE PAIN AND DISIBILITY W LYME DISEASE FOR OVER 20 YRS;;BEEN PRAYING FOR THIS
- July 16, 2015 at 4:01 pm
Suffering sinced 2009 and hoping for a life without pain someday.
- July 19, 2015 at 11:12 pm
So now can we expect our insurance companies to pay for testing and treatment?
- July 22, 2015 at 9:35 am
yes please continue to begin our fight!!!!
- August 27, 2015 at 9:25 am
Finally a country accepts that Lyme Disease exists!
Could be too little, too late for some people.
Now we need Australia to recognise the disease exists too so that sufferers don’t have to rely on the US to be diagnosed by having to pay for their own blood tests, at a very high cost, just to confirm they have the disease.
You would think that in this day & age a country like Australia would have the technology & resources to help sufferers of this disease but unfortunately little is known & no real help is provided for sufferers.
From what I have read about the disease I understand that it is usually caught from a tick bite from a deer, which are prevalent in some parts if the US. As far as I know there aren’t too many deer roaming around in Australia but there are a large number of sufferers who are not being taken seriously with the disease & also are waiting years, until it is too late, to be diagnosed.
Maybe now other countries will follow suit & try to help sufferers of this horrid disease that cripples young & old before it is too late.
Friend of a sufferer.
- August 27, 2015 at 11:51 pm
I’ve heard the Australian government and medical establishment refuses to recognize Lyme exists there. If the disease is in your ticks, it’s in your people. In the US the main carrier tick is the blacklegged, aka, the deer tick because it feeds on deer. But you probably have a different tick in Australia, that feeds on different animals. It could still carry Lyme.
- September 8, 2015 at 11:22 am
I read all the responses here and it’s truly horrific that they go into see their doctors who turn their back on them or probably hand them an anti depressant. It’s an atrocity. I’ve had my own Lyme battle for decades, bite after bite. Little by little your self worth, your ability to contribute to life in general, the inability to be a part of your family, just a ghost shell laying on a sofa or bed, and you all but wonder when will death come or will I suffer like this for decades more. This is INSANITY. I am one of the lucky few who had the money to see an LLMD but I suffer in my heart for those who have this and cannot afford to pay out of pocket for an LLMD. And the lady with the sores all over her head, I am so sorry you’re going through this. The last bite I got was in the head and I’ve not been the same since I too had these sores and still get them but improved, by and far a better place than I was 3 years ago but not enough.
From my understanding most people have to meet their out of pocket quota right off the top at the beginning of the year and with that said, i can see that even if people were able to pay the out of pocket expenses for the LLMD that the cost of the medications would bury them. Most people I have talked to with children have a minimum of $5,000 out of pocket, Prior to this affordable healthcare act those same people had the whole year to chip away those out of pocket costs not in one big lump sum. It is a double edged sword for even those who do not have Lyme. If you are sick and you have these exorbitant out of pocket costs to meet, you aren’t just going to have a nation of sick people from Lyme not getting treated but a ton of others. It’s WRONG.
- July 11, 2016 at 5:17 pm
This is a ungodly world epidemic and must be ADDRESSED ASAP!!!!
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