H.R.5377 - Cancer Patient Equity Act of 2021

1 year 3 weeks ago #61422 by Alan

I simply enjoy reading about the fruits of your research! Thanks.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 3 weeks ago #61421 by sara.anne
Replied by sara.anne on topic H.R.5377 - Cancer Patient Equity Act of 2021
This is an excellent summary of the bill.  One of the exciting things about the proposal is that a LOT in information about the genomic profiles of multiple cancers could be discovered and used to develop NEW therapies for cancers that are resistant to the usual therapies.
This would include the relatively rare variants of bladder cancer as well as shedding light on questions such as why some patients respond well to BCG and some not at all.

The American Bladder Cancer Society supports this type of legislation and we sincerely trust that someday this or similar will become law.  

Unfortunately, since Congress members are on their way home to fight for re-election, and the new Congress will have a different makeup, we may need to start all over.

Thank you for bringing this to the attention of Forum readers!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 3 weeks ago #61420 by joea73
On September 27. 2021   H.R. 5377  — A bill to facilitate the development of treatments for cancers, and for other purposes; to the Committee on Energy and Commerce.   This bill provides for coverage of certain cancer diagnostic and laboratory tests under Medicare, Medicaid, and the Children's Health Insurance Program (CHIP). Specifically, the bill provides for coverage of microarray analysis, DNA and RNA sequencing, whole-exome sequencing, and other next-generation sequencing for individuals diagnosed with cancer.
Additionally, the Department of Health and Human Services must establish an education and awareness program for physicians and the public about genomic testing and the role of genetic counselors.

The bill  H.R.5377 is also referred as Cancer Patients Equity Act of 2021.   The bill was introduced by Representative G. K. Butterfield of North Carolina.   The bill is aimed for rare cancers which often do not have set treatments besides chemotherapy and radiation, but when genome sequences are analyzed sometimes it leads to existing treatments which have been used for other cancers with similar genome.  It is noted that the bill does not specifically state that it is for only rare cancer.  According to Congressman Butterfield, the genome analysis is covered only when the recurrence happens and it is sometimes too late to have  effective treatment.  This bill enables the genome sequence analysis at the time of initial diagnosis, thus providing the right treatment at early stage.   The bill was introduced with a cosponsor Congressman Gus Bilirakis of Florida.  

The link to the bill

The link to the video of rare cancer day.  

The speech by Congressman Butterfield starts at 35:50.
The speech by Congressman Gus Bilirakis starts at 45:25

The bill H.R. 5377 is a bipartisan bill which is being cosponsored by both democrats and republican congressmen and congresswomen.
There has been no progress of  H.R.5377 Cancer Patient Equity Act of 2021 since September 27,2021 when the bill was introduced.   Also on November 18, 2021 Congressman Butterfield had announcement his retirement.   So, I do not know what is going to happen to the bill. 

I believe that the bill also will help bladder cancer patients, especially those who are diagnosed with variant types of bladder cancer, which are often treated with immediate removal of the bladder as variants are considered as aggressive.   I have noticed that bladder cancer with small cells variants borrow the treatment for small cell lung cancers.   Also, there have been studies on subtypes of bladder cancers that based upon genomic analysis, the bladder cancer can be categorized as Lumina, Basal and other subtypes, and the subtype leads to more effective treatment, eg. chemotherapy works well for Basal subtype.  In addition, many researches and studies for bladder cancer, e.g. predicting who would and would not respond to BCG or neoadjuvant chemotherapy based upon patients' genomic biomarkers.   So, I think  it is important for bladder cancers to be included in the bill.   
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