Innovation Saved My Life and is a Policy Pathway to Help Millions Living in Pain

Innovation Saved My Life and is a Policy Pathway to Help Millions Living in Pain

For policymakers who think that innovation is just a buzzword, I’m living proof that it’s not. I’m alive today because, in 2008, my oncologist used a newly approved test to analyze my breast tumor and found very aggressive cancer. We knew from the start what we were up against because medical innovation had given the doctor a new tool that could analyze my tumor. We knew from the start how to treat it because medical research and discovery had created a variety of medicines including ones that worked for my specific situation. When policies promote and support medical breakthroughs like this, patients like me are given life-changing opportunities.

I’m grateful for beating cancer and the many joyous moments I’ve had since 2008 — my daughter’s wedding, playing with grandchildren, retiring with my husband to a home in the mountains, painting. But my journey before and after that moment has left me wondering why the same medical advancements that made it possible for me to beat cancer can’t solve the pain that remains an intrusive and burdensome aspect of my daily life.

Nancy Budny

When I was in college, my head hit the windshield during a serious car accident. I’m lucky I survived, but my quality of life changed forever. Spine issues caused me pain for extended periods of time. I saw a chiropractor, had endless physical therapy, underwent surgery, and visited pain management specialists, but the relief was only temporary. Existing medicines did not solve my problem. Over the intervening years I’ve experienced other serious health issues — bone and joint problems, neuropathy, sarcoidosis, a rotator cuff tear, and psoriatic arthritis.

My pain stabs, burns, and aches. There is also numbness now — neuropathy as a result of  chemotherapy. My pain has not responded to the available treatments, or the side effects have been too much to deal with. Many mornings I can barely grip my morning cup of a coffee without spilling it. I’ve also had falls and ankle twists from the neuropathy. There are days I can’t even find the strength to paint.

I can’t help but wonder why the focus on medical innovation that resulted in the advancements that made my breast cancer diagnosis possible can’t be brought to bear on pain. For the millions of Americans like me who are living this daily battle, there are limited safe and effective treatment options that help us manage our pain— better solutions are needed.

As a nation, we need to urge our federal policymakers to find incentives that push medical research towards finding new treatment options for pain and open the pathway for innovative medicines to come to market for patients. The medicines currently available don’t work for everyone or every situation. Pain is still a mystery that has many unknowns. We need new answers – and more research in pain management.

The meaning of innovation is real-life for me and could be so for the one in five Americans who are living with pain. I believe it’s possible to find those answers. My own experiences have shown me that. September is National Pain Awareness Month, but for millions of us, every day is a Pain Awareness Day. We are waiting.

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Authored by: Nancy Budny

Nancy Budny is a 10-year survivor of breast cancer who lives in the Shenandoah Valley region of Virginia.

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Jamie

There are plenty of new drugs being investigated that aren’t opioids, but the bottom line is the side effects are awful and they dont work for a majority of people. Opioids are relatively safe compared to the side effects of gaba drugs, lyrica and antidepressants. The drugs being studied now are extensions of those already on the market plus at least one that literally eats your knees.

The medical community needs to admit that opioids work for pain and get over themselves already. We don’t have an opioid crisis. We have an illegal fentanyl and heroin problem. That’s not the fault of pain patients.

TerryOtt

Might I ask the nature of your breast cancer that was diagnosed and treated? I ask because of the rapid death of my wife several months ago as a result of her “aggressive” type of breast cancer. She also suffered nearly a decade with Intractable pain prior to the onset of her cancer.

Thank you for a wonderful article. I have wondered this on daily basis why innovation hasn’t been created that would be safe and less harmful then what’s on the market now including injections , spine stimulators NSAIDs Etc. I also wondered why they pulled the rug out from under us until this was done. It seems that every part of government now it’s working as its own law whether it be the CIA or CDC or the DEA have gone Rogue and using their policies upon the American people without checks and balances. No thinking of the future what their policies will do or damage it will create. Yes, we need new research now, we also need new guidelines for protection 4 CCP people in pain management BC doctors have gone Rogue as well. Throw in the policing Pharmacy as well as gone Rogue, I don’t need to be questioned by someone who can’t even keep their paperwork straight and share my personal history with a crowd of strangers. Doesn’t that interfere with HIPAA law? That has been broken so many times that it doesn’t exist.

Amanda P.

This is a great article that raises really important questions! I completely agree that more needs to be done to come up with better options for pain management than the traditional ways that are no longer available to us anymore anyways. It would’ve been nice if they would’ve implemented these new ways before cutting everyone off from the traditional ways so theres no gaps of pain management. When we are left with no options due to the guidelines then the millions of people in pain lose their quality of life collectively. How is this not affecting the country more? Millions of people who all of a sudden can’t work or function at the same time and nothing in the news about it? This is why it feels like a weeding out of the sick and suffering. A depopulation at the most disgusting level. JMO.

James McCay

I know your post is well meaning & I’m very happy for you that you beat breast cancer!

But it’s really hard to look for FALSE HOPE when I visited over a (12) of the “best” Neurologists in NYC (before most LEFT NY FOREVER due to high doctor pay cuts) & not one could diagnose my Myasthenia Gravis that was SCREAMING symptoms my whole life!

By 2004 (age 37), my MG symptoms reached their peak. I saw at least (5) more different Neurologists in a 2-year period & NOT ONE had a clue it was MG!

Then my hospital hires a Adenologist in 2006 (a gland doctor that’s been “phased out” & lumped in with Neurology). You know what they say out OLD DOGS & it’s SO TRUE in this case!
So I see this Adenologist who only worked in my hospital for 2-hours: 1-DAY A WEEK who saw me immediately because I was one of his 1st patients ever (he wasn’t a new DR.).
He started asking me questions and they went like this; “YES sometimes, YES often, YES often, NO, YES occasionally, & YES often! Then he examined my eyes, my jaw & more “YES” questions.

I waited for a diagnosis. He came out, put his hand on my shoulder with tears welling up in his eyes (1ST TIME SEEING HIM!) and he said “You have General Myasthenia Gravis & don’t let ANY doctor ever tell you different!”. HE WAS SO CORRECT!

My waiting was for them was to check my records to see if anyone had done an Acetylcholine Test on me & (2) out of (4) tests were POSITIVE (yet ignored!). Then he said “That is when I knew w/100% certainty that you have General Myasthenia Gravis”. Your symptoms made it 90% certain alone… this shows how little Neurologists care about this AWFUL, BUT RARE DISEASE!”.

Doctors don’t CARE about certain “RARE” diseases at all. MG is one of them. No one cares about helping MG patients in NYC & I can’t travel with Degen. Disc Disease (6 discs) and Fibromyalgia! So I suffer in silence homebound & mostly bedridden with no family at all left.

Rosalind Rivera

Why should our representatives waste money on such a useless endeavor as investing in improving the quality of life for the millions of us existing and suffering with daily, chronic and intractable pain?

Rosalind Rivera

The government is too busy allocation monies to other much more vital things such as purchasing toilet seats for say, $ 1,000.00 or so they say? Why spend money on such a useless thing as improving the quality of lives for those of us suffering with chronic and intractable pain?

J.D.

I can appreciate the innovated medical advancements that have come over the years and seemed for awhile to actually be something that were researched and created for the betterment of someone with an illness or disease such as the Spinal Stimulators that they have been implanting. It seems that now much of the research is aimed at how much money can be brought in from anything that is produced/created. I have no problem with medical and drug companies making money because the more they make, the more they should be able to find things to help people. I look at products that have been made and tested to see what type of illness they might be helpful for just to see them forced onto others while the doctors basically know that it will not help a particular type of illness/pain. The doctor also knows that they can make a really sizable profit from lying, cajoling and finally cornering a person into using something that could do permanent damage which would leave that individual worse off that they were.

I am a very cynical person at this point as I believe many people also have come after they have had to either endure themselves or watch a loved one slowly mentally, physically and or emotionally become a shell of what they once were or even a seemingly completely different person. It is a terribly sad thing and really makes some of us fearful of going to doctors or hospitals. Some even just lose all hope and give up on everything.

Not really sure if this post was actually on topic as it somewhat spiraled into more of a rant but I know that I have written a post like this at least 5 different times in the past while deciding to delete it before posting it. I guess sometimes things just get to you after being awake for many days as I am sure many of you can understand.

Ronda C.

Superb ideas. “We need new answers.” That is the simple truth. Thank you, Nancy Budny, for sharing your story.