What is needed??

[tmann]

Hi Everyone,  This might seem an obvious question and answer but sometimes we learn something new from the obvious.  If you had to break it down to three to five bullet points, what would like to see improved with treatments?  Whether it seems obvious or it might be unique and you are Ok with sharing.....thank you in advance. 

 

[Rower Michelle]

Hi there, 

That’s an insightful question. Given there are so many treatment options & various deliveries I’m going to take a shot at this;

1.  Decrease the pill burden.  I take six pills a day therefore tracking the doses can be quite a challenge. 
 

2. Reimbursement parity for all cancer therapies… targeted therapy (pills) is reimbursed differently than IV treatments making the copays unaffordable for most people.  A friend of mine just cashed in her 401k.  Remission came at a steep price.

3. Pass legislation to eliminate prior authorization for cancer treatments. Unnecessary treatment delays cost lives.  Cancer patients do not have time to wait on insurance prior authorizations.     Most of us now know that the “peer reviewers” making these decisions are not board certified oncologists & have no expertise in cancer treatments  

4. Better education about the typical side effects and how they can be effectively managed- rather than waiting for the onset of known common side effects it would be nice to have prescriptions ready to go rather than having to make a middle of the night phone call to the after hours service  (and waiting for the pharmacy to open)

5. Let’s get moving on vaccines- we know the technology can move fast when it has too.  Since lung cancer is the number one killer with the least amount of research funding- moonshot a vaccine.  This is a great investment since most of the lung cancer discoveries benefit other cancers. Ease of administration would eliminate the high cost of administering IV therapies in the clinic setting and increase patient adherence potentially improving progression free survival rates for patients with advanced lung cancer. 

6. There are many FDA approved treatments on the market for other cancers that could potentially be repurposed for lung cancer but pharma isn’t necessarily incentivized to do this type of research particularly if the patent is nearing an end… there’s got to be some type of bonus for drug repurposing…

So that is my wish list—- I think you will find that most of us really want a high quality of life and for the treatment not to be worse than the disease.  I am a very motivated survivor who is willing to tolerate a lot with the exception of the admin BS.  I don’t think any cancer patient should have to fight to get life saving treatment.  The administrative burden our doctors face takes away from their ability to do what they do best & that’s take care of us.

 

Michelle 

 

 

 

[BridgetO]

I  completely agree with Michelle!

[Tom Galli]

tmann,

I’m a 17-year survivor of NSCLC treated with surgery, fractional radiation, lots of chemotherapy, targeted therapy, and precision radiation. If I could use a magic change wand, I’d wave it for these changes:

▪️Use the damn port! Why use veins when one has a perfectly functioning port? But hospitals and physicians persist to order bloodwork by accessing veins. This is an easy fix!

▪️Approve multifocal percision radiation treatment as a standard of care. Percision radiation is accurate and effective. Unleash this method to allow Stage IV treatment, alone or in combination with chemotherapy. Frying 3 small widely spaced tumors is just common sense!

▪️Accelerate Biopsy and Biomarker test results. A histology find should be reported the day of the procedure. Biomarker testing turn around must be dramatically accelerated. Treatment can’t begin till these results are known. In this day and age, waiting 2 to 3 weeks for a biomarker test is barbaric. 

Stay the course. 

Tom

[Rower Michelle]

Yes to everything Tom just said! 

[Judy M2]

Piling on to both Michelle and Tom (and maybe Tom said this), I'd suggest that liquid biopsy be added to initial testing for faster turnaround. While circulating tumor DNA is not always expressed by tumors, if it is and testing shows a treatable gene mutation, targeted therapy can begin right away if the patient has a high symptom burden. 

I watched a video presented by the EGFR Resistors Group yesterday, and Dr. Joshua Bauml explained that liquid biopsy testing could be heading toward RNA also. 

In another presentation a couple of weeks ago by cancerGRACE.org, the oncologists mentioned that future biomarker testing could use other bodily fluids like urine and saliva, and even breath. The tests need to be developed, but this may be what the future looks like. 

[Rower Michelle]

So I’m going to chime in here to bump up the thread, after speaking to some of my LC peers here’s what the latest chatter is:

1. Keep our telemedicine options open, recently some of the academic centers haver limited or discontinued this service.

2. Make telemedicine available across state lines, in this day and age of technology the concept of being restricted by state license is bogus.  It was okay to do when a pandemic was raging but now it’s not?  Doesn’t make any sense. 
 

3. Open clinical trials up to remote participation.  Too often a clinical trial closes for lack of enrollment.  The ALK Postive,Inc. President Gina Hollenbeck says where you live shouldn’t determine if you live.  So true….

4. Expedite access to compassionate use therapies, there are too many administrative barriers, from a healthy person’s perspective a few weeks doesn’t sound like a big deal but when your life is literally on the line, time is of the essence.  

[Rower Michelle]

Even the physicians are complaining about the telemedicine roll back- check out where your state stands in this mess!

 https://www.fsmb.org/siteassets/advocacy/pdf/states-waiving-licensure-requirements-for-telehealth-in-response-to-covid-19.pdf