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21st Century Cures Act

abita's picture
abita
Posts: 1014
Joined: Dec 2017

I see that this has a law that went into effect this month here in the USA. I am mostly hoping it means my scan results will be online a day earlier. :) 

I am not entirely sure what the law about being able to get the info means, as I do get my results eventually. I just have doctors who want me to see them first to get them in case there are things that might be interpreted wrong by me. I am an Aries and an intorvert with high scanxiety,, so personally, I want the results as soon as they are ready.

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

That is great news, especially for Aries :)

Now if they would retract the MSK law of owning the patients tumor to state the rights of the patients to get tumor back so you can have new advanced testing on your tumor.  Craziest thing I've ever heard between NY and MSK -  They own your tumor if they remove it.  Just Wow!!!

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Can you tell me what law that is? I am googling it and can't find it.

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Ask MSK for the policy about having ownership/rights to your tumor.  From what I understand it only applies to MSK in NY state.  If you get the policy on it I would love a copy to read for myself.

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Doesn't sound like a real law. Maybe someone misunderstood what was said to them. I feel incredibly fortunate to be at MSk.

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

No doubt they are great!  People come from all over the world for treatment/surgery.  Just don't like to share apparently and that isn't good for the patient in certain situations where options are running out and need to find another avenue for answers.  MSK got the law passed for them to have ownership, NY state said OK.  This info is from a cancer patient who requested a sample of their tumor be sent out for advanced testing that MSK doesn't offer and was denied based on the law they got passed.  The patient really needs to get a copy of it and have a lawyer look at it in my opinion.

NewHere's picture
NewHere
Posts: 1333
Joined: Feb 2015

MSK have had no problem sharing my records and tumor with other places.  When my FOLFORI stopped working and there were no trials at MSK for me, they told me check into other places, including Yale,  would keep an eye out for anything else that opened up, and would go over any study that I found to answer any questions I found.  ct

The peson you know may want to contact that patient advocate department at MSK.  As an aside, MSK does extensive testing https://www.mskcc.org/msk-impact Not that it means that a patient should not be able to try other tests elsewhere, and get their tumor tissue as needed.   

 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Thank you so much!  I will pass that along right now.  Do you remember if you signed an agreement giving up ownership before surgery?

NewHere's picture
NewHere
Posts: 1333
Joined: Feb 2015

It has been over 6 years on since I started there.  I do remember they presented forms regarding whether they could use the tissues in studies.  

I looked for the NY Law regarding the ownsership, but could not find it.  I would love to read that one.  I found an article or two discussing the general issues regarding tissue samples/ownership/use.  If such a law was passed, it should be revoked or have an opt-out.  AND even then it should be made abudently clear to a patient what they are signing.  With the amount of paperwork that is thrown in front of you, coupled with the stress of having a cancer DX, I am not sure how much any patient goes into the details of all the things which are basically a adhesion contract for all intents and purposes.  

I could see some things such as where a medicial facility would require proper HIPPA assurances from the receiving facility (or proper waivers from the patient) before releasing samples.  Or perhaps discussing with a patient before sending off to some places I would call "suspect" in the claims of treatments.  Regardless, still should be patient's choice.  

PamRav's picture
PamRav
Posts: 306
Joined: Jan 2017

Ok then. Thats why i received my lab results soooo quickly.  This is great 

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Yes, waiting for results is the worst!

Real Tar Heel
Posts: 203
Joined: Nov 2019

I noticed a new message on my hospital's online portal hidden within the "after visit summary," which says that we often see test results before the doctor has seen them. I don't know whether that simply means that the doctor has other things to do than to constantly check on our results or it's some new message required by legal. lol. However, most times I saw scan results before the doctor commented but sometimes it was clear the doctor had seen them first before they were released to me.

abita's picture
abita
Posts: 1014
Joined: Dec 2017

there was an annuoncement on my portal also, which is how I found out.
My results from scans started showing up the day of or before my scan results appt right after the pandemic started. I don't think my doctor knew because he doesn't like me seeing them before him. So I never asked specifics, because I didn't want him to realize they were there. 

But, I am glad because waiting makes me super anxious. 

Real Tar Heel
Posts: 203
Joined: Nov 2019

Yeah, I was checking my phone all the way home yesterday. Probably should have waited...lol

NewHere's picture
NewHere
Posts: 1333
Joined: Feb 2015

I was used to the 4 day wait before seeing the results in the portal, but this last test they were up that evening.  Was shocked.  My doctor's are good about not making me wait for an appointment to get results.  At this point I have had over 40 CT/MRI/PET and not much is going to shock me at this point Laughing  Blood tests are posted within minutes - I will get port accessed, have bloods drawn and the main tests can be seen in the portal.   Some tests (CEA for example) do take a while to do.  

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Bummer. MSK announced they will wait until the providers get to talk to patients before releasing the scan results. That is depressing.

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