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. 

U.S. in ‘Fragile State’ as Election Nears

By Roger Chriss, PNN Columnist

The United States is about to have its national election. And for the first time in American history, the election will happen amid a pandemic.

The country is deeply divided, unsure about how to address the coronavirus, what to do about health insurance or drug overdoses, and which way to move forward on social justice, racial inequality and socioeconomic divisions.

In the realm of public health, the coronavirus predominates as the country faces another surge in infections, with a record count of nearly 100,000 new cases Friday. Hospitalizations and deaths are rising across the nation.

“As we enter the coming months, which include a national election and many holidays, our country is in a fragile state. Many people are understandably worried about the days and weeks ahead,” Children’s Hospital of Philadelphia warned in a blog post.

“Wearing masks and resisting the temptation to take part in medium to large gatherings that include people who are not members of your immediate family/small bubble are things we can and must do to protect ourselves and our loved ones. We encourage all to be safe out there, and to get out and vote safely, if you have not done so already.”

In addition to the pandemic, overdose deaths are rising again, largely due to illicit fentanyl and other street drugs. The United Nations reports that synthetic cannabinoids are also a rising threat. And if all this weren’t enough, Washington state is seeing an invasion of murder hornets.

“Whatever the outcome of the election, the coming winter will be difficult. And whoever occupies the White House on January 21 will probably have to deal with another major epidemic before his term is over,” journalist Ed Yong writes in the Atlantic. “The U.S. has now clearly seen what happens when a pandemic occurs under Trump. It is an experiment that no one should ever want to rerun.”

The election process itself is fraught this year. NPR is reporting that hundreds of polling places in Iowa will be closed on Election Day due to the coronavirus. Voting for people quarantined or newly diagnosed with Covid-19 could also be difficult if they can’t vote by mail.

The election outcome is uncomfortably uncertain. Politico assembled a day-by-day guide to all the possible outcomes from November 3 to January 20, from recounts to Supreme Court intervention. If President Trump loses, Politico also put together a list of what he might do during his remaining days in office, from mass pardons to a revenge campaign against the “Deep State.”

Election Pain

This is the stuff that nightmares are made of. Some people are abandoning social media, going off Twitter or internet discussion forums, or deleting news apps and silencing their phones. Others are engaging in “radical self-care” by playing video games or binging on old TV shows all day long, or hibernating their way to November 4. There is no end of online discussion about how to get offline and avoid discussion of the pandemic, politics and election outcomes.

But after the election, some things will not change. People with chronic disorders will still have the same diagnoses, the same treatment options, and the same prognoses as they did before. Election outcomes matter, but not for some things.  

Most people with chronic painful disorders have already survived far worse than the coronavirus or this election. Election pain may lead to a sleepless night or two for some people, but chronic pain can lead to sleepless nights for years. Insomnia is a routine part of small fiber neuropathy, complex regional pain syndrome and ankylosing spondylitis.

Election pain may create digestive problems like GERD or IBS for some people, but chronic painful disorders can include a lifetime of gastrointestinal distress. The ability to eat comfortably and digest reliably is not something that people with Ehlers-Danlos syndrome, pancreatitis or inflammatory bowel disease enjoy.

Election pain may make the time after November 3 seem uncertain, but for people with disorders like epilepsy, multiple sclerosis or sickle cell disease, that uncertainty is normal. Life is never stable when your body may misfire at any time.

Election pain may make life even harder for people with these disorders. The best we can do is stick to our routines and stay focused on our health. Come the results of the election, we can be gracious. And if all else fails and everything is hellish, just keep going.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.