Why the Word “Repeal” Receives Negative Responses from Pain Patients

Why the Word “Repeal” Receives Negative Responses from Pain Patients

By Shaina Smith


Shaina Smith

As the nation remains in a temporary transitional period, whereby new members of Congress, state lawmakers and key leadership officials are settling into their new positions, there’s an area of focus people with pain are diligently watching: healthcare coverage.

News stories and articles are flooding television programs and social media sites that warns the nation of a possible overhaul and replacement of the existing health insurance system. As there are 1 in 3 Americans riddled with some form of chronic pain, a complex disease which requires carefully calculated assessment and management, U.S. Pain Foundation is speaking out about how change of this magnitude could be a matter of life and death for some patients.

You may find yourself wondering, what happens to the healthcare system if changes are made and how will this impact my treatment plan? That’s the million-dollar question being asked among a varied range of individuals, and the answer may include the significant altering of a person’s treatment. That’s according to National Director of Policy and Advocacy for U.S. Pain Foundation, Cindy Steinberg.

“The organization and patients are worried about what affects this might have on people with pain, many who cannot work and rely on government programs such as Medicaid and Medicare for their healthcare,” Steinberg explained. “Individuals who depend on such plans includes people with chronic pain who must have access to necessary treatments to remain functional.”

Throughout the decades, the United States has been made aware of the commonalities shared among nations when it comes to the healthcare system, as outlined in The Commonwealth Fund’s 1998 Annual Report. The report found that similarities among diverse nations included “effective services that improve the health and quality of life of their citizens, equitable access to those services, and efficient use of resources”. How to obtain those goals may vary from country to country. One step that had been taken by the United States to reach those goals were in the form of the Affordable Care Act (ACA).

Now, 18 years later from that report titled Common concerns: International Issues in Health Care System Reform, Americans are facing the potential to have the healthcare system altered. The Commonwealth Fund’s January 5th publication, which studied the state-by-state effect of repealing federal tax credits and Medicaid expansion, found that canceling the ACA’s tax credits and Medicaid expansion would double the number of uninsured Americans. The study also found that as millions lose their insurance, hospitals and other providers would see their uncompensated medical care costs soar by $1.1 trillion from 2019 to 2028, and they would experience major revenue losses as well.

With such uncertainty as to what, if any, new system will be introduced to lawmakers, it’s no wonder that the word “repeal” is coming off as a fearful term. “Without knowing much about what may replace the Affordable Care Act, it’s difficult for U.S. Pain Foundation to make a definitive statement,” shared Vice President of the organization, Nicole Hemmenway. “That said, many people with pain have pre-existing conditions. Our Board feels dismantling the ACA will harm people with chronic illnesses who rely on access to treatment options covered under their health plans.”

Outside of U.S. Pain, partner organizations and coalitions have notified constituents of concerns, encouraging that they reach out to their senators and request that they vote no on ACA repeal legislation. Rallies are being planned, some by elected officials such as Virginia’s Senator Tim Kaine, who recently encouraged residents to join the Rally to Save Our Healthcare at the Virginia state capitol on January 15th; the Governor, fellow senators and congressmen are expected to attend. Trending hashtags such as #ProtectOurCare which is an online campaign led by Families USA is drumming up the support of patient advocates and has already gained the endorsement of Democratic Leader of the U.S. House of Representatives for the 114th Congress, Nancy Pelosi. State coalitions are forming, comprised of healthcare groups, advocates and others which have formed to preserve the ACA. Letters are being sent to congress by coalitions who are requesting a replacement plan in place that won’t create catastrophic results.

U.S. Pain joins other patient-centered partners who are patiently waiting for the new administration to offer the chronic pain community a concrete plan which will cover their medically necessary treatments, while also balancing the healthcare system’s built-in structure to offer affordable coverage. Until such a plan has been presented to an already vulnerable population of citizens, the word “repeal” will have patients cautious about their healthcare coverage options.

Shaina Smith is Director of State Advocacy & Alliance Development for U.S. Pain Foundation. Diagnosed with various pain conditions, including Ehlers-Danlos Syndrome Hypermobility Type, Shaina utilizes her Journalism background to mobilize pain patient advocates and engage volunteers to participate in awareness programs.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Shaina Smith

newest oldest
Notify of
Tim Mason

If you like your doctor you can keep your doctor. If you like your plan you can keep it.

Any change to Insurance or Medical Care is like a box of chocolates. You have to buy it and open it to see what’s in it.
Health Care is a business with many, many “middle men”.
Physicians are now “managed” by groups of investors, charges negotiated.
Those on Medicare and such get the “run a round” literally, until their dollars and patience is exhausted.
I have heard of schemes that these managed physicians are required to use for Medicare patients to exhaust them.
I consider it a form of “Elder Abuse”


Rhonda, if President Trump or his Agency Heads think the CDC Guidelines are wrong, they can order them to be reversed. But they won’t. The President, whoever it is,at the time, gets blamed for everything people don’t agree with.

By the way, the DEA,reduced the active ingredients for Schedule Ii drugs by 1/4 for 2017. That includes ADD meds as,well as opiates. I know several people that are already putting a certain number of tablets back each month so they won’t be without any meds when the pharmacies run out before the year is up and the manufacturers have a chance to make more in 2018.


I am a chonic pain patient myself. I am 46, and now am in college. I too have ADD, but was just recently dx with it. I just, started medication for it. I did not graduate high school, but did have the ADD as a child as well. My point being, please encourage your wife to go back to school. It can be done. I even had a SAH/Stroke in 2007. Best of luck to you both.

As far as the ACA is concerned, it is a disaster and needs to be replaced. None of this can fall on President Trumps’ shoulders, as it was President Obama that allowed the CDC to take all these actions against us pain patients.


medicaid and medicare were around long before the “AFA” nothings going to change,,, and NOTHING could be more detrimental than what the reds meddling in our health care has already been…. addicts are going to get what they need wherever they can, pain patients, who have already been under serious regulations are just getting continually squeezed and cut off, most to the point of choosing death than going on….. whats really the bigger issue? theres nothing to repeal if us as pain patients are being denied appropriate care and treatment anyways!!!!


If the ACA is repealed and those with substance abuse problems can’t get care, it is going to make it harder on legit chronic pain patients because there will be a lot more addicts seeking pain meds.



This what I’m talking about. Increase in premiums and no care. Something has to be done.


I know no one likes change but personally since ACA came in place our insurances have doubled as well as meds being noncovered. Obama is totally to blame and now itbjas increased again this year for premiums for those who are low income or even small business. It is quit ridiculous. I have multiple pain disorders and being that Obama has got the CDC DEA FDA and the white house convienced pain meds are killing all these peope, when in doubt the majority of deaths are from herion and cocaine with fentanyl overdoses and those who use from the street as recreational high. Not the REAL PAIN PATIENTS and I’m sick of hearing about it. Their proof has been said it is not scientifically proven it is a bunch of [edit] they pulled out of their [edit]. Can’t wait till one of them or loved one has to deal with pain and can’t get help. Now the insurance companies are also on board and I can’t get any med over 100 quantity filled and it is not even controlled. So I now have to pay 2 copays a month for several meds. It has gotten out of hand and needs to be fixed. Trump said new plan would include those who had pre-existing conditions and terminally ill and those with chronic disorders. So we will have to see what is in place now. He also said he will not stand for pharmaceutical companies to have medications where patients can’t afford them. As a pain patient and ambassador with US Pain I fight and advocate constantly and my suggestion to you all is to write to the CDC DEA FDA White House and most importantly your local representatives. It is so important for them to hear from the REAL PAIN PATIENTS about what we have and our concerns and what their plans are. My big concern on top of it all is the increase in suicides that is occurring due to people not being able to get treatment or being taken off medication or decreased. We can’t live this way. So take a stand and let your voices be heard. BE YOUR OWN ADVOCATE FOR NO ONE ELSE WILL!!!


MichaelL, in the states that did not expand Medicaid, you have to be poor with dependents or receiving SSI, or a child from a poor family in order to receive Medicaid. If they go to Block Grants, it will be up to each state how that Medicaid money is spent.

Medicare will be affected. The cost will go up and the quality of care will go down. Everyone that currently receives Medicare will be affected. How those are affected that will receive Medicare in the future, has yet to be determined. But, Medicaid nor Medicare will be the same.

Cheri Furr, politicians lie. Politicians say what people want to hear so they can get elected. The President can do little without the votes of Congress and the Senate..

Annette Merkley

It’s my greatest wish that all these lawmakers and the head honchos at the CDC have ALL their health insurance (medical/dental/drug coverage) taken away from them .. AND… that they all be stricken with Complex Regional Pain Syndrome (CRPS or RSD)….then and only then will they understand what these folks are dealing with on a daily basis…and then maybe they will work to fix it!!

Cheri Furr

Trump said that they would “repeal and replace” ACA. He also said that pre-existing conditions would still be covered, and premiums and deductibles would be lowered. I heard him with my own ears. I hope the US Pain Foundations and other advocates for the chronic pain community hold his feet to the fire and not let him get away with anything less!!!


In Louisiana, Medicaid will not pay for Pain Management of chronic pain. If a patients pcp or other doctors tells them they have to see a pain management doctor, and most of them do, the patient will have to pay out of pocket $150-$200 a month for the visit plus the drug screens or do without pain medications. This is not new. Louisiana expanded Medicaid in July 2016.

With the restrictions on prescribing opiates that states like Tenn have in their Medicaid program, those that have chronic pain and have to depend on Medicaid,will more then likely find themselves without pain meds if the states go to Block Grants for Medicaid. If the ACA is repealed, the Republicans plan to give the states Block Grants for Medicaid.

Anything done to Medicare will make it harder for Medicare patients to receive quality care and choose their providers.

Repealing the ACA will not lower the costs like many think. But, it will lower the quality of care many receive now.

Carla Cheshire

We are the only industrialized country that hasn’t seen fit to provide health care for all its people. This is a disgrace. Anywhere else there is no question- you’re covered. Patients waste more energy and stress out over how on earth we’ll pay our health care bills when it shouldn’t even be a question. It makes us sicker. We are so brainwashed as a people that we believe that a health care system run for profit is better than what other countries have. We pay 6x’s more and rank 37th in the world! Why is health care so expensive? Insurance Co’s who provide no care must make a 20% profit to remain viable to shareholders,where do you think the profit comes from? Our Congress has allowed BY LAW pharmaceutical companies to charge whatever they deem necessary for prescription medicines. They too must provide profits every year for their shareholders! They are doing quite well, I might add. I blame Obamacare for not bringing a public option into being at the outset. Continuing to believe Big Insurance and Big Pharma are going to bring affordable health care to America is a cruel joke maintained by those executives and politicians benefiting from yours and my illnesses while their riches make sure their families are well provided for.


I’m definitely not among the group of chronic pain sufferers referred to in this article. Until my employer was forced to comply with the ACA, I never had any problems with insurance coverage of my prescriptions. Now, however, I will be forced to pay about $5,000/year in addition to the $1,100/year co-pay that has been the norm for the last decade - for only one prescription! I seriously doubt that whatever changes are made to the ACA will result in this situation remaining as is or increasing. The ACA forced insurance companies to find ways to recoup revenue lost by their required participation. In my case, they chose to not reimburse my pharmacy for the full amount paid, with no reason given. This will lead to either catastrophic financial ruin for my wife and me or having to find another medication to replace what has been fairly successful for me for over 15 years. The problems with the second option is that 1) for almost 26 years, I’ve already been prescribed most every narcotic and/or non-narcotic, available with little to no relief, and 2) the current medication is one of the strongest pain relievers available; obviously, stepping down is not going to provide similar relief. No, the ACA has not been a good thing for this chronic, severe pain sufferer, in any way. I am excited about any changes that will be made to it. I am very sympathetic towards those who might have negative outcomes from these changes but, in reality, hasn’t the outgoing President already caused massive suffering with the actions taken by the CDC, FDA and DEA? All of these agencies made their decisions to negatively impact opioids at the direction of President Obama. Nobody can convince me otherwise, at least not with facts that are public knowledge as of today.

Jean Price

Seems there is a lot of fear in general these days…of the unknown, or the “what ifs”, of past problems resurfacing, of new people creating havoc, and of change in general…and how it might affect us all! Sadly, the “wrong”people will be making the decisions…in a perfect world it would be those impacted by any health care reform who would help repeal, revise, or recreate a new plan! And only those affected now would vote on if the need for change was there! We can all see this would have made all the issues we have now in pain care so much less…if we had been offered the opportunity to add in our “working knowledge”!! Yet, someone who will likely never have to rely on this health care plan will make the decisions! And that never works out well! Sad, since “of, for, and by the people” WAS such an insightful way to run a country! WE THE PEOPLE seems to only include government officials and those high up in business these days!


At the present, anyone that has Medicare is either getting it through retirement benefits, or disability. That would not change. Expanded Medicaid would not likely be attacked either, since it makes sure those, with low incomes, who cannot afford to pay the high cost of medical care, including maintaining insurance, are being covered. Pre-existing conditions should have been wiped out with the ACA. So, people would, now, qualify for insurance plans that would not have qualified prior to the ACA.

That being said, my question would be about those people who have chronic pain syndromes that are not on disability. My wife has a history of five pain syndromes. One was eliminated with the advent of the ACA when she had her, long needed, hysterectomy. She also has a history of a learning disability. But, since she is no longer in school, it has little effect on her. But, she has been told to go back to school to get more training so she could do more than factory work. (None of her doctors even seems to know that she had a learning disability as a child! She barely graduated high school! I guess none of them has ever done a complete history and physical on her!? That was one of the things that the medical board complained about with my care for my chronic pain patients. But, as always, it was something for me to do and no one else!?!!) We need to get more people help. But, as Senator Rand Paul, MD says, we should have a replacement that would immediately take effect.


Thank you Shaina for this informative update and for all that you, Paul and US PAIN staff do on our behalf!