Healthcare Is a Human Right That We Deserve

By Jennifer Kain Kilgore, PNN columnist

I shouldn’t have to write this. But here I am because of headlines like these:

“FTC Refunds Almost $3.9 Million to Purchasers of Deceptively Advertised Quell Wearable Pain-Relief Device”

My body went numb after reading that. The Quell, which I wore for four years, that I blogged about, that I recommended to friends and family? That Quell?

The Federal Trade Commission slapped parent company NeuroMetrix for deceptive advertising. Specifically, the company was cited for claiming the Quell works throughout the whole body and not just where it’s worn.

“NeuroMetrix settled the case – without admitting or denying the allegations – for $4 million. The company also agreed to stop claiming that Quell provides relief for chronic or severe pain beyond the knee area where the device is worn,” PNN reported.

Soon enough I was receiving texts -- “Is this true?” “Does it not work?”

It worked for me, but that’s not why I’m writing this. My testimonial is still and will remain on NeuroMetrix’s website. The company didn’t ask me to come to their defense. Despite the bad press, that gadget worked for me.

NEUROMETRIX IMAGE

Getting a $50 refund from NeuroMetrix in my PayPal account, though? The company’s silence and tacit admission made a helpless rage boil inside where anger has been simmering for weeks and months and years.

It made me as angry as when desperate pain patients called my law office, asking if I would draft legislation or talk sense to their doctors. Or when a genuinely good product came on the market but took advantage of customers. Or when the Sackler family didn’t go to prison after their pharmaceuticals created the conditions for the national opioid epidemic to truly explode. That bubbling anger began to rise.

Where should I direct this rage? At the callers? At the makers of the SpineGym, who took their crowdsourced money and failed to deliver on their promises? At the Sacklers? No, of course not. It’s not about them. My anger is bigger than that.

I shouldn’t have to write a reaction piece about the FTC’s decision. I shouldn’t have to draft laws to change a healthcare system in which pain patients are discounted, dismissed, and even overlooked.  Sometimes our limitations and physical pain prevent us from seeking the help we need.  

I shouldn’t have had to write for Pain News Network in the first place, though I’m thankful for the opportunity to do so. I became a columnist in order to try all the gadgets claiming to cure back and neck pain. If my doctors wouldn’t help me, I would help myself.

And there it is.

A record-breaking number of citizens have already voted. Despite their overwhelming voices, a Supreme Court justice was just appointed whose legal interpretation could dismantle the Affordable Care Act, which is on the Supreme Court Docket on November 10, just seven days after the most important election in history.

If you’re reading this, health insurance is crucially important to you or someone you love. Right now, our president’s legal team is in court attempting to kill the ACA without any kind of replacement during a global pandemic that has killed over 231,000 Americans.

But that’s not why I’m writing this.

I used to blog about my journey through the healthcare system. By the time I’d graduated from the Quell to an implanted spinal cord stimulator (which also works), I’d exhausted myself. It was time to focus on finally, finally healing. You know, being a normal person again.

The spinal cord stimulator -- controversial for sure, and not a surefire bet -- ended up working beyond my wildest dreams. Even though I’ve pulled on wires and scar tissue, my life has been partially restored. My doctor said the Quell was a good indicator as to whether a SCS would even work. If the Quell helped, so would a spinal cord stimulator.  

Before the SCS, I wasn’t able to consistently work as an attorney; I could barely leave my house. I was dependent on my husband for everything from insurance to carrying bags of groceries.

After the SCS, I can do yoga and pilates. I can lift laundry baskets. I can go to work and sit through a two-hour deposition. I can be an actual person again.

But that’s not why I’m writing this.

I shouldn’t have spent sixteen years of my life begging for help. I shouldn’t have to become a patient advocate and a writer for an online publication because I couldn’t otherwise afford pain-relief devices.

I shouldn’t have to write this.

I shouldn’t have to fight my insurance company to get my treatments covered. I shouldn’t have to stagger bill payments to various hospitals so as not to overdraft my account. I shouldn’t be paying for my spinal cord stimulator more than a year after its implantation.

I shouldn’t -- we shouldn’t -- have to do these things. We shouldn’t have to fight so hard to live in what’s supposedly the greatest country on earth.  What’s so great about living in fear? Fear of the unknown, the future, access to healthcare resources, and effective treatments? I’ve lived in fear for long enough, and so have you.

I shouldn’t be here. You shouldn’t be here, reading this. This website shouldn’t exist, and we shouldn’t have to fight so hard. But one in five Americans adults has chronic pain, and something must be done.

Healthcare is a human right, and we deserve it.  So VOTE.  Protect your loved ones by protecting healthcare.

Jennifer Kain Kilgore is an associate attorney at MALIS|LAW, working in civil litigation. She has chronic back and neck pain after two car accidents. 

Pre-Existing Conditions Deserve Affordable Treatment

By Dr. Lynn Webster, PNN Columnist

The National Institutes of Health reports that about 10 percent of Americans experience a substance use disorder (SUD) at some point in their lives. Most of those who suffer from an SUD receive no treatment.

About twice as many Americans – 20 percent -- have chronic pain. Many of them also cannot find adequate treatment or even a provider willing to treat them. 

Making treatment accessible for both of these conditions -- which are defined as pre-existing for insurance purposes -- is always a topic of concern. These days, it is of paramount concern that access to treatment is available. And it requires us to take action.

We’re All at Risk for Pain and Drug Abuse

Poverty and hopelessness are risk factors for drug abuse, even though not everyone who is economically challenged develops an SUD. Unfortunately, prevention and treatment programs for SUDs are less available to those who cannot pay for them and who most need them.

Anyone can suffer from chronic pain, but even those with resources may not have access to adequate pain management.

My concern is more than theoretical. It is personal. I have friends, former patients and family members who suffer from SUDs. If the Affordable Care Act (ACA) — widely known as Obamacare — ends and we lose coverage of pre-existing conditions, I fear they will be abandoned in exactly the same way as people in pain have been abandoned ever since the CDC issued its 2016 opioid prescribing guideline.

In recent years, I have received hundreds of emails and calls from people in pain. Their medications have been tapered and they don't know where to turn for help. Untreated chronic pain, as well as untreated SUDs, can result in ruinous consequences: disability, destitution, isolation, poverty and suicide.

We need to help healthcare providers find more effective ways to treat their patients. The Centers of Excellence in Pain Education (CoEPEs) program was created to teach healthcare professionals about pain and its treatment. Since this is something most doctors do not study adequately during medical school, it's important to have continuing medical education opportunities to learn about the stigma associated with pain treatment and substance abuse disorders.

Abolishing ACA Could Have Devastating Consequences

The current administration has appealed to the Supreme Court to abolish the ACA. President Trump has said that Obamacare "must fall." Given the fact that we're in the middle of a pandemic and millions of people are unemployed and may have lost access to employer-sponsored healthcare, the timing seems terrible.  

But even without a pandemic, reversing the ACA would be devastating for millions of Americans who have an SUD or chronic pain. President Trump signed an executive order on September 24 that claims to protect people with pre-existing conditions. However, experts dispute whether his executive order can actually do what it promises.

Regardless, eliminating the ACA will likely allow insurance companies to charge higher rates for people with pre-existing conditions. This would essentially render treatment for chronic pain and SUD unaffordable for many people, leading to an increase of the terrible consequences mentioned above. And, of course, SUDs and chronic pain are only two of the pre-existing conditions that would no longer be protected. 

It is time for everyone to understand the consequences that losing the ACA may have for their community, family, friends and themselves. There is still time to be heard, but you have to act quickly. Click here to find your federal, state, and local elected officials and express your views.  

Let us also send healing thoughts and prayers to President Trump, the First Lady and everyone else infected with COVID-19.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

Obamacare Prevented Thousands of Opioid Overdose Deaths

By Pat Anson, PNN Editor

The expansion of Medicaid under the Affordable Care Act – widely known as Obamacare -- was associated with a six percent lower rate of opioid overdose deaths, according to a new study that estimates thousands of overdoses may have been prevented by expanding access to healthcare for millions of Americans.

Researchers also found a significant and unexpected increase in overdoses involving methadone, an addiction treatment drug sometimes used to treat chronic pain.

Thirty-two states and the District of Columbia opted to expand Medicaid eligibility under the Affordable Care Act (ACA), providing healthcare coverage to uninsured low-income adults. ACA requires that individuals who receive coverage be provided with mental health and substance use disorder treatment.

Researchers at the NYU Grossman School of Medicine and University of California, Davis looked at death certificate data from 49 states and the District of Columbia between 2001 and 2017— looking for changes in overdose rates in counties that expanded Medicaid under ACA compared to those that did not.

Their findings, published online in JAMA Network Open, suggest that Medicaid expansion prevented between 1,678 and 8,132 opioid overdose deaths from 2015 to 2017.

Overall, there was a 6% lower rate of opioid overdose deaths, an 11% lower rate of heroin overdoses, and a 10% lower rate of death involving fentanyl and synthetic opioids other than methadone in states that adopted the ACA.

"The findings of this study suggest that providing expanded access to health care may be a key policy lever to address the opioid overdose crisis," said senior author Magdalena Cerdá, DrPH, director of the Center for Opioid Epidemiology and Policy in the Department of Population Health at NYU Langone Health.

Methadone Overdoses Rose

Cerdá and her colleagues also found a concerning 11% increase in methadone overdose rates in states that expanded Medicaid under the ACA. Methadone is an opioid that has long been used to treat addiction, but it is also prescribed by some doctors to treat chronic pain.

“Although the rate of methadone-related mortality is relatively low compared with other opioid classes, our finding that Medicaid expansion was associated with increased methadone overdose deaths deserves further investigation,” researchers said.

“Past research has found high rates of methadone use to treat pain among Medicaid beneficiaries and that the drug is disproportionately associated with overdose deaths among individuals in this population, underscoring the importance of ongoing local, state, and federal actions to address safety concerns associated with methadone for pain in tandem with Medicaid expansion.”

In 2014, the methadone prescribing rate among Medicaid patients was nearly twice that of commercially insured patients. Medicaid patients were also slightly more likely to be prescribed methadone for pain (1.1% vs. 0.85%) as opposed to addiction.

Expansion Reduced Opioid Deaths

The ACA became law at a time when opioid overdose deaths were rising sharply. Some critics of Obamacare claimed that expanding access to low-cost opioid pain relievers would create an incentive for low-income Medicaid beneficiaries to sell their drugs.

“It stands to reason that expanding the program — particularly to people most susceptible to abuse — could worsen the problem,” a 2018 report by Sen. Ron Johnson (R-WI) claimed. “The epidemic has indeed spiraled into a national crisis since the Obamacare Medicaid expansion took effect in 2014. Drug overdose deaths have risen rapidly, at a much faster pace than before expansion.”

The NYU and UC Davis study found that theory to be false.

"Past research has found Medicaid expansion is associated with not only large decreases in the number of uninsured Americans, but also considerable increases in access to opioid use disorder treatment and the opioid overdose reversal medication naloxone," said lead author Nicole Kravitz-Wirtz, PhD, an assistant professor in the Department of Emergency Medicine at UC Davis.

"Ours was the first study to investigate the natural follow-up question: Is the expansion associated with reductions in local opioid overdose deaths? On balance, the answer appears to be yes." 

Don’t Drown in Anxiety Over Healthcare Bill

By Barby Ingle, Columnist  

With everything going on with the American Health Care Act (AHCA), there is a lot of anxiety and stress over possible changes to our health coverage.

There were people who took to social media to start their protests before all of the facts were in. I have yet to read the actual bill and when I reached out to others who were commenting on it -- as if they read it and knew what was in it – well, they have not read it yet either.

So I kept looking and found an interview with House Speaker Paul Ryan, which talked about the biggest concern most of us have – pre-existing conditions. Before the Affordable Care Act (Obamacare) became law, people with pre-existing conditions paid several times more than others — if they could afford or be approved for a policy in the first place.

The latest version of the ACHA passed by the House would allow states to seek waivers from existing federal law and create “high risk pools” that would allow insurers to charge more for pre-existing conditions if someone lets their insurance lapse.

To help combat the increased premiums and out-of-pocket costs, GOP Reps. Fred Upton (MI) and Billy Long (MO) crafted a provision to provide $8 billion to states to help fund high risk pools or subsidy programs for people with pre-existing conditions. It would be left to each individual state to decide how to spend the money.

If you have a pre-existing condition, what can you do? First, contact your state legislators and make sure that your health conditions are covered under any pool or subsidy program. It is up to us to raise our voices, share our stories, and demand that our lawmakers remember us and our conditions as they move forward.

Luckily for us, there are many steps to go in this process and we don’t know what the outcome will be. The U.S. Senate still has to vote on the ACHA and is likely to make changes.  It is also important to note that the House version of the ACHA does not spell out what sort of pre-existing conditions insurers may cover if states seek a waiver. In the past, some insurers identified domestic violence, sexual assault, caesarean birth and postpartum depression as grounds for denying coverage or charging higher premiums.

Letting ourselves drown in hearsay, low expectations of the current administration, and sharing information that is not accurate to make a point is not going to fix or change anything. It will only cause us anxiety, stress and energy pennies that as chronically ill patients we don’t have the ability to recover from.

Is it time to act? YES. Is it time to over-react? NO. The water is rising, but it’s only up to our knees and we’re still standing. Before the tide comes in further, make sure you are doing what you can to be heard and in ways that will matter for our pain communities. VOTE, make phone calls, be willing to testify in person if needed, answer calls from the media to discuss how the ACHA will affect you if the conditions you are living with are not covered.

Don’t exaggerate or give false information about a list of pre-existing conditions that won’t be covered. Remember, each state will decide what pre-existing conditions will be included if they get the waiver granted. Instead, bring to light that our healthcare costs are already higher than healthy patients, because we have more doctor visits and treatments, and are paying more in out of pocket costs.

Our options are already limited and we need to have a seat at the table of decision makers. We can get that by being factual and accurate, and by voting for people who will remember our stories.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.