The Lymphedema Bill in Congress

kira66715

It's been re-introduced, with many more sponsors, and a higher chance of success. However, the bill pretty much only covers garments, due to heavy lobbying by the APTA--who believe that all PT's are qualified, without additional training, to manage LE.

Just found this on the APTA site: remember when Nicole Stout wrote into the Washington Post when Binney and I were quoted in an article, and stated that LE never causes pain? The NLN had to issue a retraction. Nicole Stout has done some good research--she did the study where they put garments on women with early changes of LE and got some resolution, but she sure does guard her turf, and now there is no federal movement to guard us against poorly trained therapists....:

http://www.apta.org/PTinMotion/NewsNow/2011/7/20/HR2499/ 

WEDNESDAY, JULY 20, 2011
Bill Enhances Lymphedema Treatment for Medicare Beneficiaries

Legislation introduced last week by Rep Larry Kissell (NC-D) and 17 other original cosponsors enhances lymphedema coverage and better directs treatment methods for Medicare beneficiaries. Specifically, the Lymphedema Diagnosis and Treatment Cost-Saving Act of 2011 (HR 2499) defines lymphedema diagnosis, treatment, and compression treatment items; clarifies which health care providers can provide treatment; and ensures payment for treatment.
Introduced in the last congressional session, HR 2499 has undergone a number of revisions. APTA Board of Directors member Nicole Stout, PT, MPT, CLT-LANA, led efforts to eliminate additional certification requirements, clarify which providers can provide diagnosis and treatment services, and remove restrictions on garment fitting. The new, streamlined legislative language is less confusing and more flexible. Due to these changes, APTA now supports this legislation. 

Binney4

This kind of thing breaks my heart

...but not my spirit!

APTA is a lobbying powerhouse, but they're dead wrong about this issue. The only reason they get away with this stuff is because LE patients have been put down for so long. It's up to us to make our voices heard. Yes, we need our garments paid for. But we also need well-qualified therapists and a way to hold them responsible for delivering proper treatment.

Onward!
Binney

cookiegal

grrrrr

BeckySharp

What can we do?

kira66715

Becky, excellent question, the bill was simplified to just cover treatment and garments and eliminate the training requirements.

Whenever we question this, we're told we can petition the local licensure board for PT"s--well, I queried why Linda T Miller, queen of the weekend wonder courses, graduate of no qualified LE training school, gets away with calling herself "Doctor" when she holds a bachelors degree, and the PT board of Pennsylvania would not divulge any information about her, beyond what I could find on their web site. So that avenue is worthless, especially when we're facing a powerful national lobby.

I personally think we should somehow make insurance credential PT's. Since they argue that LE treatment is covered in their general training (I have an article to show that it is not.) 

It's actually pretty appalling: let's say a general internist decides that her training suddenly qualified her to perform brain surgery--well, her state licensure board would/should suspend her license, for practicing outside the scope of her training.

How do the PT"s get away with it. Add the OT"s to it. And, since their training is so varied, the national LMT people won't touch the subject.

Maybe we ask NALEA--the four major training schools what to do about it. But, they signed on to the bill as major "stakeholders"--the sad reality is that with the training stipulation gone, they got the APTA and the American Cancer Society, and a far better chance of getting some where with the bill.

Nicole Stout was on the board of the NLN until she resigned to devote herself to APTA.

And remember, she is the expert who declared that lymphedema is never painful....No further training necessary....

Someone figures out what we can do, let me know.

Kira 

toomuch

I agree with Cookie -- Grrrrr.

kira66715

Nancy, I saw quite a number of PT's--and through out and still I have my highly trained LMT who is LANA and Klose and Vodder certified, but insurance will not pay for her as she's not a PT/OT--and I found that since I don't have 2 cm of swelling--because I wrap every night and wear compression--I was told I didn't meet criteria for treatment. And the patients I send to the best LE clinic I can find nearby get treated until the volume goes down and then discharged with no follow up.

I posted the advice from the LE PT, and she said the relationship should be long term, but since the PT insurance model is assess, treat and discharge--it's nearly impossible, and way too much time is wasted documenting medical necessity. LE needs a different insurance criteria.

I saw a patient at high, high risk for LE, with an achy arm, and her surgeon had her see the LE clinic at her hospital twice, but didn't code as LE, and the patient is stuck with a $800 bill.Now that her arm is painful and feels swollen to me--yet doesn't measure 2 cm ( a completely made up criteria--created by 2 PT's for one study, never validated, yet accepted as the gold standard), I sent her back to another clinic and coded it as LE. I figure she's stage zero at least.. I wished I had a bioimpedance to document increased fluid.

Getting back to Nicole Stout: why don't PT's accept their limitations: medical students can't get a license when they graduate with their MD's--they have to do their residency. Why should PT's be assumed to be competent in all areas of rehab--without additional specialty training--, when good studies show they're not?

Kira 

ktym

Not saying I disagree with you on the training issue and how sickening it is to see people defend their turf instead of their patients, but, I still see the bill as a step forward.  Mandating insurance coverage for breast reconstruction did not mean all women were guaranteed reconstruction by a plastic surgeon who specializes and has extensive experience with breast reconstruction.  It still was a major step forward for breast cancer treatment.  If changing the language is the only way to get this passed, I'm thankful for at least that much.  I'd love to have seen the stronger language too, but I'd be happy to see at least this much happen.  Just would love to let some involved know that they aren't fooling us.  They aren't supporting this because they care our lives are improved, they're supporting it to line their pocket

kira66715

Kate, you nailed it. When the bill first came through, my younger daughter was a legislative aid for a congresswoman, and she told me it was considered dead in the water from the start. I guess the CBO--Congressional Budget Office has to sign off on it, and declare savings, and you need at least 100 co-sponsors.

I agree, concessions were made to try and get a bill that would pass, but as you so wisely wrote--they're not fooling us.

Kira