What Matters to You: Patient Advocacy

We know what matters to you. These are events in the US that don’t necessarily make headlines every day, but they affect you, or your sister or neighbor. Every day, someone is affected. Without fail.

Hands Down! These Advocates Know What Matters To You! — They fight for what is right. They don’t care who is looking – they are stalwart and persevering every moment of every day – with a Passion!

The following people get our respect and admiration in recognition of tireless advocacy in the face of a courageous effort for someone else.

Perhaps you do not know their names, but each one has put in hours to the wee morning times, busting their brains with writings, efforts, and passion – to make your life better.

We so much appreciate their efforts!

1. THE POWER MORCELLATOR

DR AMY REED AND HUSBAND DR HOOMAN NOORCHASHM

ALONG WITH REP. BRIAN FITZPATRICK

What matters to me is that every woman, girl and husband in the world know the name of Dr. Amy Reed, who fought to save women undergoing gynecologic operations from dying from a medical device, the power morcellator.

Dr. Amy Reed. Mother, Wife and Patient Safety Advocate for Women's Health — Honor and blessing for all the work Dr. Amy Reed did, paying the ultimate price so other women didn’t have to do so.

Amy just died from aggressive cancer that was spread from her uterus to her abdomen, lungs, and spine, due to the morcellator.

What also matters to me is that every husband defend their wife like Amy’s husband, Dr. Hooman Noorchashm, did. He is to be commended for his tireless championing and scrutiny of the FDA 501(k) approval process, and initiation of the U.S. Government Accountability Office’s Congressional investigation, the adverse event reporting process with the fellow advocate participation of Rep. Brian Fitzpatrick

Screen Shot 2017-06-05 at 11.20.45 PM — Image Courtesy: Drugwatch

and for just doing something unusual these days:

Stand by your woman.

After 23 years of cancer spread by the morcellator, with not one adverse event reported by any surgeon until Amy herself filed a complaint, they won a blackbox warning on these medical devices, so its use decreased. While there is no ban on the morcellator, one can visualize it on the horizon.

Incredibly, gynecologists still advocate its use (well, it makes surgery faster, so they can do more cases and make more money) even though it can spread unknown cancer in women, causing them to … die. The morcellator is as ugly as the word sounds, and it needs to be banned (like it has been in Brazil, Canada, and removed from the UK, and other countries. In the USA, it’s “business as usual.”

If you know a woman going in for a hysterectomy, tell her to instruct the surgeon not to use the morcellator. Period.

Visit SlaySarcoma.com to Support Women's Cancer Research — Part of the proceeds of The Rebel Patient book by Dr. Margaret Aranda will go to SlaySarcoma.com Thank you for supporting patient safety and patient experiences.

You can help by donating to SlaySarcoma.com, sharing articles, and using these hashtags on social media: #morcellator #SlaySarcoma #DrAmyReed #DrHoomanNoorchashm #patientsafety #ptsafety #womenshealth #PatientsIncluded #PatientExperience

2. THE NON-OPIOID CRISIS

What matters to me is that no patients commit suicide or die due to the non- “opioid crisis.” Many patients have already faced uncomfortable cutbacks or withdrawal of pain medication, through no seeming fault of their own. Many argue that this “crisis” was never a “crisis” supposedly due to chronic pain patients who were accused of abusing prescription drugs but in reality, they simply gained significant quality of life from opioids. We are sorry that many patients are telling us they were completely dropped from prescription refills, and cannot even find another doctor office that will accept them as a patient.

The infamous “CDC Guidelines” for primary care physicians have turned into law, even though they stated it was not the intent. Well, they did not get off to a great start by holding secret meetings without a physician or patient advocate experienced who even had pain. It is an undisputed fact that this “crisis” was never a “crisis” for chronic pain patients who had gained quality of life from prescription opioids. We are sorry that many patients are telling us they were completely dropped from prescription refills, and cannot even find another doctor office that will accept them as a patient.

This is particularly devastating to many, as incredulously, the CDC published their own paper saying,

The amount of opioids prescribed in the US peaked in 2010 and then decreased each year through 2015.

So why did doctors stop prescribing pain medication to pain patients? Oh – illicit heroin and fentanyl, says the CDC.

Oh – illicit heroin and fentanyl are the real culprits, so much so that fentanyl is the most common cause of overdose in Dayton, Ohio. Ohio firefighters complain of twice resuscitating the same people from IV heroin on the same day. This has led some lawmakers to either forfeit EMS’ carrying naloxone, or making a “2 strikes and you’re out” policy for nonresuscitation.

Many are trying to figure out just where we stand on patient care, medications, addiction medicine, and the compassionate treatment of every individual. Period. We recognize these individuals for speaking out in defense of tens of thousands of patients:

RICHARD “RED” LAWHERN, PHD.

Exemplary acts of kindness can be seen on “Red’s”

Screen Shot 2017-06-06 at 1.25.49 AM — ADVOCATE FOR PATIENTS WITH CHRONIC PAIN, RICHARD “RED” LAWHERN, PH.D.

website, Giving Something Back. From helping students to find graduate schools, teaching how to find information in the internet, and as an advocate for people in pain, he extends a range of volunteer activity. Red’s June 1, 2017 post by the National Pain Report is an incredible position of staunch patient support.

WARNING TO THE FDA: BEWARE OF “SIMPLE” SOLUTIONS IN CHRONIC PAIN AND ADDICTION

“On May 9-10, 2017, the US FDA held a workshop titled “Training Health Care Providers on Pain Management and Safe Use of Opioid Analgesics—Exploring the Path Forward.” I attended that Workshop in person to offer public comment on behalf of chronic pain patients…”

He boldly dives in on major points that leave one to question what authority or expertise really went into the CDC Guidelines. One is left with an uneasy feeling that there is much more background information on the convening and runnings of the committee. Red spells out secret meetings, selective input and questionable conclusions that are worth one’s own read here.

You can help by sharing articles and using these hashtags on social media: #chronicpain #pain #chronic #chroniclife #Spoonie #spoonies #SpoonieLife #SpoonieProblems #SpoonieStyle

Follow Red on Twitter @lawhern1 – and you’ll be glad you did!

ILLEGAL IV DRUG USE

LEGITIMATE PATIENT WITH PAIN

Illegal IV Drug Use vs. Legitimate Patient with Chronic Pain: both need compassion and care.

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THOMAS KLINE, MD, PHD

The most beloved Dr. Thomas Kline is patient advocate extraordinaire, for patient engagement, patients included, and putting patients first.

See his original article, The Myth that Prescriptions Caused the Opioid Crisis.

Dr. Kline clarifies that “the addicted person” has something called Chemical Receptor Disease (CRD).

CRD gives these patients:

“…far more euphoria than would the 97 percent of people who take narcotics and alcohol without the disease.”

Tune in for a good read to set a good framework. And Join him on Twitter to voice your real-life experience with pain, pain medications, or the lack thereof.

DR. STEFAN KERTESZ

Now here’s another great guy and doctor whose heart is passionate for addiction medicine, homelessness, and research in primary care.

Whenever there is a need for updated evidence-based medicine, Dr. Kertesz zaps up an article that is timely and poignant.

Dedicated to evidence-based medicine, our Veterans, and a defender for patients who have chronic pain, Dr. Stefan Kertesz commands respect for having a very logical voice to help patients who suffer. His article, “Will Pill Control “Fix” Our Problem: The Allure of Simple Solutions to the Opioid Crisis” was presented June 9, 2017 at a conference, “Substance Use Disorder in America: Research to Practice, and Back Again”. He shared the stage on Responsible Prescribing with Dr. Deborah Dowell (CDC) and Dr. Dan Hartung (Oregon Health Sciences University).

We particularly admire Dr. Kertesz’ pinned Tweet, which highlights comments made on MedPage Today:

We are failing to expand addiction treatment access to the degree that it is needed. We are also failing to build policy to address the circumstances that drive drug seeking, including the abysmal lack of social opportunity for young adults in many communities. Finally, many agencies are tacitly or actively allowing pill control efforts to devastate the lives of pain patients who were stable until their care was completely upended. ~ Dr. Stefan Kertesz

Dr. Stefan is candid to highlight chronic pain patients who are thinking of committing suicide due to the lack of prescription opioids. As the situation continues to evolve, you can bet that you can count on us to represent patients first, quality patient care, and excellence in medicine.

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So, just know that there are people who are looking out for you. Lots of them are doctors who still believe in “doing no harm” to patients, as Hippocratic oath goes. Furthermore, they believe in this: