Email steve@steveariens.com 502-938-2414
Pay Attention
Veteran. On opiates for 10 years. 50% cut.
Sick
As
Hell.
Language alert.
Is this the type of healthcare we can expect… if we get Medicare for all… and HHS/CMS is in control Filed under: General Problems | 1 Comment »
What is believed to be the largest-ever patient survey on chronic pain is being kept open. Over 3,000 chronic pain patients and loved ones have filled it out in the last year.
“There’s nothing like it out there,” said Terri Lewis, Ph.D., who is the study author.
She told the National Pain Report this week that the survey has generated over 200,000 lines of comment data which she and her team are busy tabulating.
One thing she told us really stood out—that respondents have tried 262 different alternatives to treat their chronic pain.
If you have not yet filled out the survey, you can do so here.
You’ll note that this survey originally was designed to present data to the FDA for its Public Meeting for Patient-Focused Drug Development on Chronic Pain last summer. But Dr. Lewis has kept the survey active because of the vast information it’s generating.
She said that the data collected will be able to use in three basic ways.
Dr. Lewis points out that a big number of people who are responding would otherwise be in the prime of their working and economic lives were it not for injury and illness that they endure.
“They are very unhappy with the system they have to rely on. They are extraordinarily negatively impacted by shrinking footprint of healthcare and public policy,” she pointed out.
Many of the respondents have been dealing with their illnesses and injuries for many years and had achieved some degree of stability of care until the opioid wars destabilized their provider system.
If you have not yet added your voice to this—please do.
If you are not yet following us on Twitter, please do:
@NatPainReport
@edcoghlan
To follow Dr. Lewis, and to keep up on her on behalf of chronic pain patients, find her @tal7291
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Let me start out by saying that I’m the lead tech at a store in a college town and have worked as a tech for 4 years. My store has, in the past year and a half both of our pharmacists quit (we only have 2) then got a new staff pharmacist in and a Pharmacy manager until after 6 months our pharmacy manager quit. For the past 9 months we have had an interim pharmacy manager, who was only supposed to be here 3 months, and the pharmacist who was supposed to replace him quit after 3 days. A few months later a pharmacist from out of state was going to take over, he quit after his 5th day. 3 techs have transferred in and ALSO QUIT getting better jobs on campus.
Not only are employees treated as disposable but patients are pretty much shit on with how our district leader wants us to treat them. We are supposed to turn on text messaging, script sync, and readyfill even after the patients decline it. Want off PCQ calls? Too bad. I’ll be calling every weekend until you wise up and go to a better pharmacy. Have Caremark insurance and can’t go anywhere else? Lube is in aisle 11.
We already have horrible customer service as we at max have 2 techs at a time for 5 hours. Opening and closing is done by one tech. Every day there is a line of people in drive through, in store picking up and dropping off and 3 PHARMACY CALLS. The wait time we tell people is an hour, 2 hours for C2s and if we are transferring from another pharmacy it’s 24 hours.
When people complain we are not allowed to tell them we are understaffed and busy.
Our interim pharmacy manager is about to jump ship and I will be too after I graduate. Really hope one day CVS goes bankrupt as a corporation.
If my district leader is reading this, sincerely go fuck yourself.
www.reddit.com/r/CVS/comments/apxylf/the_worst_cvs_pharmacy_is_the_one_i_work_at/
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I took my yearly drug screen 2 weeks ago. I noticed that unlike before, adderall and xanax were listed as rxs I take. I asked about the xanax tablets because I’ve taken 3 (Three tablets) in the past year. 2 (two tablets) for tests, and 1, (one tablet) for surgery. Adderall has been a regular RX of mine since Feb. 2005. Four days after the urine screen my Dr’s office calls says my screen is “inconsistent” for xanax. I say, “I’m in the car, ill be right there to take another test and get a copy of the previous urine screen results.” I’m shaken up, I’ve done nothing wrong, nothing whatsoever, I took nothing, used nothing. The Med assistant said they didn’t want another test, but informed me the N.P. needs to see me before she’ll prescribe for me again. Still driving, I say yes, I want an appt. asap. I arrive at the N.P. office only 5 minutes after I’d answered their call. Again I ask for a UDS, again, “No”. I filled out the form to obtain my UDS from the previous week, When I review the report I see it states that the definition of “inconsistent” in my case is that there was “NO TRACE” of xanax. I went to my appt with the N.P. I waited 1 1/2 hours in an exam room. She came in she asked why I was there and I repeated the message her assistant called me with. The N.P. began loudly stating conclusions about me and said she should’ve done a pill count on me and that she’ll no longer write rx for me. When it was over I walked calmly to the checkout desk and asked for my records. I received my med records yesterday, which ends with the statement that I “failed” my drug test. What do you recommend? I live in a small community that my family and myself have been well thought of for decades. I need a lawyer. My welfare, reputation and life have been damaged, The final page of my healthcare record in their office states I failed my drug screen
I have seen this before, a pt is discharged because of a “bad lab” and refusal to let the pt take a second test.
This situation is stranger than most, the pt had taken a total of 3 doses of Xanax over the last year at the time of procedures.
And the NP was looking for a positive urine test for Xanax days or weeks after the pt had taken a Xanax as a single dose on two separate occasion.
I have often expected that the reason(s) behind some of these irrational discharges is because the practice has taken on too many pts and/or someone has quit and they can’t find a replacement or chose not to replace them.
Are they going thru the billing records and seeing which insurance is paying less than others, a slow payer or one requiring a higher number of PA’s, or the pt is one of the lower generator of revenue/yr.. not all pts generate the same amount of revenue. After all healthcare is nothing but a FOR PROFIT BUSINESS.
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Why would we be sycophants for the Attorney General, who misrepresents the facts for political gain, so he can claim a “victory” in a drug war (against people) that is 50 years old, costing $2 trillion?
AG Fox is featured in the Montana Medical Association bulletin this month, supporting added mandates for physicians and others who provide prescription medications. “Know your Dose” is a program right out of American Society of Interventional Pain Physicians, not scientifically based, and holds a prominent ad buy in the bulletin.
The surge in back pain in Montana is directly related to the surge in procedures.
Drs. Bender and Danaher testified under oath in Dr. Christensen’s trial, in order to take out their competition.
Dr. Christensen took on opiate refugees from Missoula Spine, as the plan, now successful, was to eliminate opiates, so as to enable more procedures. Did you know that epidural steroids are NOT approved by FDA? That ESIs can cause adhesive arachnoiditis, and Intractable Pain?
That .01 percent of patients metabolize opiates so rapidly that they require very large doses (similar to diabetics who require huge insulin doses)?
That Physicians for Responsible Opioid Prescribing, a group of addiction doctors, claim that opiates for pain are heroin pills, and never should be used, and they claim this without evidence?
There is another side to this whole story that has yet to be told, or is being told by doctors and patients who have been marginalized, and that includes myself. The Board Of Medicine took me out, in coordination with DEA. It worked.
But the DEA, regulators and legislators are practicing medicine without a license, always mindful of: “We cannot tell you what to do, we are not doctors.”
It is well known that the board of medicine deprived me of my due process rights, had “experts” that were found to be lying (not credible) and ignored the findings of their own hearing officer, David Scrimm. The intimidation of doctors in this state has worked. It worked on me.
The consequences, intended or not, are that Montana has been turned into a wasteland for pain management. We have become a Third World state, with people in such misery that they kill themselves.
Let’s have an open debate about the terror that doctors have been feeling.
Let’s look at the tribalism and shaming happening around pain and addiction.
Let’s interview patients who were taken from their familiar primary care MD, and forced to see a mid level NP or PA, who took them off their stable regimen.
It’s nasty.
Follow the money.
But remember FEAR: false evidence appearing real.
In a letter to the Statesman Journal, Dr. Darryl George wrote: “I have seen providers misread drug tests and dismiss patients with rapid or no tapers. They fail to do confirmation testing to ensure the office test is accurate. They look for any excuse to fire the patient. Many of these patients will become unable to work, become less functional at home, and personal relationships become strained. Some patients end up divorced or contemplate suicide when their pain is uncontrolled.
The “ugly” happens when federal and state agencies blame the opioid epidemic on providers and patients.”
The facts are coming out. Montana leads the nation in suicides. Pain mismanagement and malfeasance have created a hostile regulatory environment for doctors.
I’m a member of The Montana Medical Association.
MMA could start standing up for patients who have been abandoned and physicians who try to help them.
Of course, the message and messengers were not welcomed.
Truth will come out.
Where will we be standing when it does?
Mark Ibsen, MD, is the former owner of Urgent Care Plus in Helena.
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Jeff Walsh, DEA Asst. Special Agent, sits down with WESH 2’s Matt Grant to discuss issues patients are having getting legitimate prescriptions filled. Feb 2015
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COLUMBUS, Ga (WRBL) – A large group of officers responded to the scene early this morning at the Southeastern Regional Pain Center.
Officers, with the Drug Enforcement Administration were in and out of the facility all morning. At least six police cars were on the scene as well. Police officers were busy monitoring traffic and keeping vehicles away from the premises. A spokesperson with The Office of Inspector General, Federal Department of Health and Human Services tells News 3, their division was executing a search warrant.
We reached out to officials on the scene for further details on the case, but they refused to make a comment. We were told the investigation continues. We will keep you posted for more updates to this story online.
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https://foxsanantonio.com/news/local/dea-warns-the-dangers-of-edibles
SAN ANTONIO — Gummy bears, cookies and drinks have THC. But what many people don’t know it can knock you out for days.
It used to be pot brownies were the only edibles around, but now brownies aren’t the only thing that contains that secret ingredient that many now swear by: THC, which is extracted from pot.
The Drug Enforcement Administration, DEA, is warning those who are buying marijuana edibles about their strength.
THC derived from cannabis is now a big seller even in states where marijuana is still illegal. But as the DEA tells us, many who are buying it have no idea that edibles take longer to affect you and may be taking more than they should with some extreme effects.
“You have these items that you can actually eat, it could be bakery products, candy-looking products, that contains THC, which is the content in marijuana that gives you the high,” said Dante Sorianello, DEA.
As we saw during our recent trip to Colorado, the legalization of recreational marijuana has produced a whole new line of consumable products. Legal recreational pot products have become as common as what most of us have at happy hour according to this cannabis dispensary owner in Colorado.
“Having a joint at night or having the cannabis edibles at night do not affect you anymore then having a glass of wine at night with your spouse,” said Wanda James, owner of Simply Pure Marijuana Dispensary.
But according to the DEA, the problem is that edibles take a little longer to affect most people, so instead of taking one gummy, they may take more, causing them to ingest a lot more THC than they should. THC is the psychoactive ingredient that gives you that high. As we were told by law enforcement in Colorado, some people have passed out for more than 8 hours because they ate too much THC. Another issue, according to the DEA, is that some of these edibles look like candy and can be picked up by children or by an unsuspecting adult.
“There may be a warning label on the packaging when they sell it, but if you have those open on the table, how do you know? How do you know, if you go to a friends house and you go to a candy dish, and I’d like to say I hope your friends aren’t doing this, but they have some sort of edible candy that contains THC, ” said Sorianello.
For now though dispensaries in states where cannabis is legal are seeing huge profits from edibles, especially in one key demographic that may surprise you.
“So women are the fastest growing consumers of cannabis, especially on the edible side,” said James.
“It’s important to get that load of narcotics off the street, but if there are people out there suffering or risking potential death, we want to do that first,” said Sorianello.
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https://news.yahoo.com/crackdown-opioids-victims-people-need-live-100058361.html
Caylee Cresta, 27, a wife and mother of a young son, is a victim of the opioid epidemic, although not in the way you might think. She doesn’t have needle tracks on her arms; she gets her dosages legally and has never overdosed. But she has a problem shared by many Americans who depend on painkillers to get through life: the well-intentioned effort to discourage doctors from writing unnecessary prescriptions has made opioids harder to get for people who actually need them.
Sometimes she runs out altogether.
“I hide on my really bad days,” she says — the times when she can’t get a prescription filled — “and on my better days, which are always days that I have my full dose of opioids in me, those are the days when people see me.”
Cresta has a rare condition called stiff person syndrome (SPS), which affects the brain and spinal cord and causes painful spasms that can be strong enough to break her bones. Sudden stimuli like stubbing a toe or a hug from behind can trigger a spasm that lasts for hours. While the disease is most common in people between the ages of 30 and 60, disabling them more and more over time, Cresta was 18 when she had her first spasm. It took a couple of years and dozens of doctors before she knew what was happening to her body.
“I was a senior in high school,” recalled Cresta. “I was sitting at lunch one day and I just got this terrible throbbing pain in my jaw. The first place I thought of was my dentist. Then they referred me to the orthopedic surgeon and when I got there, the nurses looked at my mouth. As she’s looking around, my jaw slams shut. And it stayed like that for 18 days … until somebody put me under anesthesia and broke it out of place.”
Cresta spent a year and a half seeing 30 different kinds of specialists before she was diagnosed with SPS. By this time, the muscle spasms had progressed down her body and in one instance, she could hear the bones in her hands breaking. Her doctor, a neurologist who specializes in rare diseases, offered opioids as a treatment to slow down her nervous system and help relieve the pain prompting the spasms, but Cresta refused to take them.
“I had grown up watching a fair amount of addiction” in her family, said Cresta. “I have seen what addiction could do.”
Eventually, after being confined to a wheelchair for months and in the emergency room with a spasm, Cresta acceded to a doctor’s insistence on giving her an intravenous opioid. After it was administered, she felt near instant relief.
When her neurologist again offered opioid medication as a treatment option, this time Cresta agreed. “Within 25 minutes of taking that first pill, my life completely changed,” she said. “It was like somebody handed me this little tiny piece of my life back. And as my willingness and the dosage grew, I got a bigger and bigger piece back.”
She added with a sigh, “Opioids saved my life.”
However, in recent years, due to the crackdown on opioid prescriptions, Cresta has increasingly encountered doctors unwilling to prescribe to her and pharmacies reluctant to fill her prescriptions. Caught between the fear of overdosing and of the prospect that their pain could drive them to suicide, people like Cresta are fighting to stay alive. While the blame for the epidemic is handed off from addicts to doctors to the pharmaceutical industry, chronic pain patients are collateral damage in a fight that leaves doctors wary of treating them.
In his State of the Union address Tuesday, President Trump boasted, “In the last Congress, both parties came together to pass unprecedented legislation to confront the opioid epidemic.” In October 2018, he had signed a bipartisan bill, the Support for Patients and Communities Act, to fight the crisis that claimed over 70,000 lives in 2017 and kills 115 every day. The bill would set new provisions for Drug Enforcement Administration’s opioid manufacturing quota, increase access to prescription monitoring databases, and require the Department of Health and Human Services to annually notify “outlier prescribers,” excluding those who have hospice or cancer patients or are already being investigated by the inspector general.
“So here’s this tragedy and here’s this message that something went wrong with the prescribing culture, said Stefan Kertesz, an addiction scholar and professor of medicine at the University of Alabama at Birmingham School of Medicine, told Yahoo News. “If that were all, that would be plenty to change physician behavior, [because] you can’t ignore 70,000 people dying.”
But, Kertesz continues: “It’s hard to think about the patient’s best interest when the doctor feels like they could be taken down at any moment.” He says every week or two he learns about a suicide related to reduced opioid supply. “And the patient who’s been on opioids for long-term pain comes to look like a serious threat and a liability to the physician’s own survival.”
Twenty-eight percent of medical professionals including doctors, nurses, pharmacists, chiropractors and physical therapists admitted to feeling complicit in the opioid crisis, according to a survey by Delphi Health Group, a rehab center in Florida. Forty percent of doctors said they are prescribing fewer opioids than in previous years.
“Most medical professionals believe they’ve prescribed opioids to an addict, so yes, we can say that the pressure is justifiable,” said Gesa Pannenborg of Delphi Health Group. “They are aware that they are sometimes portrayed as one of the villains when it comes to opioid deaths.”
Cresta felt the effects of this pressure on her doctors.
“A few years ago, primarily in 2016, everything started to get a little bit more uncomfortable,” she said. Her Connecticut-based doctor, who is a three-hour drive from Cresta’s home in Reading, Mass., started to receive letters from her state’s prescription drug monitoring program (PDMP). He also got letters from Connecticut, she said.
“My pill is a rare milligram,” said Cresta, who is prescribed opioids up to 400 morphine milligram equivalents (MME) per day, which is well over the over the 50 MME/day threshold for what is considered safe prescribing to avoid overdose. According to the Centers for Disease Control and Prevention’s guideline for prescribing opioids, “physicians are recommended to avoid increasing dosage to ≥90 MME/day or carefully justify a decision to titrate dosage to ≥90 MME/day.”
Between 2006 and 2017, the annual prescribing rate for high dosage opioid prescriptions (90 MME/day or more) declined by 56.5 percent. In 2017 alone, these prescriptions fell by 46.5 percent.
“With a high enough dose,” said Cresta, “opioids can stop me from spasming, but more than anything, they allow me to retain some functionality and keep some quality of life.” She adds that she’s never gotten high from the drug.
Even so, Cresta and her doctor, both fearful for the doctor’s practice and livelihood, agreed that she’d instead see a pain physician, someone who could prescribe her the high dosage she needed without being flagged. Finding a pain management doctor proved challenging. “They don’t know my disease,” said Cresta, who worried that her various doctor visits looked like “doctor shopping.” “I never got a script from any of those doctors,” she said, “but going to see multiple doctors doesn’t look good either.”
Not long after she’d found a doctor willing to take a risk on prescribing the high dosage she needs, Cresta was right back where she started. “One day I walked into [the doctor’s] office and she had gotten a letter from Medicare and Medicaid,” said Cresta, whose voice softened as she recalled the moment. “She said that she’s gotten this letter about her Medicare, Medicaid patients that said she was over the prescribing line. I’m on private insurance; that letter didn’t have anything to do with me, specifically. But she looked at me and she said, ‘For you as a high-dose opioid patient, you’re somebody that influences my prescribing and I have two kids to put through college.’”
Cresta said she sympathized with the doctor, but felt deeply hurt. “I left that day, and within two days one of my lungs had collapsed. Within three days after that, the other lung collapsed.” She inevitably returned to her specialist, the one who had received PDMP notices because of her dosages. “He said to me, ‘I’m not gonna let you die,’” said Cresta. “And he took me back on as a patient.”
With over 191 million opioid prescriptions dispensed to American patients in 2017, including those for methadone, OxyContin and Vicodin, according to the CDC, the opioid epidemic is a problem almost entirely confined to the U.S. There were nearly 218,000 lives lost to overdoses related to prescription opioids between 1999 to 2017. As a result, state and federal regulatory bodies are cracking down on prescribers.
Physicians like Ajay Manhapra told Yahoo News the pressure to prescribe — or not prescribe — opioids “becomes a damned-if-you-do-and-damned-if-you-don’t situation.”
“Five, 10 years back, I started tapering a lot of people because they were dysfunctional,” said Manhapra, who is now an addiction medicine specialist at a Virginia clinic, but previously worked in a hospital intensive care unit. “A bunch of them got better, a bunch of them kept coming back to the hospital.”
Manhapra said he made the “medical and ethical” decision to taper opioid prescriptions when he saw patients weren’t improving and were becoming dependent on the prescribed drugs. “I said to them, for your best interest, I’m not willing to make the prescriptions, but I will work with you, and if you don’t want that, I will recommend you to another physician.”
The backlash to his decision was swift and enduring. “I was written up so many times,” he told Yahoo News. “Nurses complained about me. Patients complained to the government about me. It was significant stress to stand up against this whole movement of prescribing opioids for anybody who [thinks they] deserve it.”
Today, Manhapra treats patients who are voluntarily trying to stem their opioid dependence, among other addictions. But years ago, not all of his patients chose to have their opioids tapered. It was his decision, one he felt confident about making.
But many physicians are making similar decisions based on outside pressure from regulators or insurers.
“In most circumstances. I would tell patients to trust their doctors when they have a medical problem or to trust their children’s doctors,” said Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP) and co-director of opioid policy research at Brandeis University.
“But in the case of opioids,” continued Kolodny, “it’s hard because the reason we have this epidemic, the reasons so many Americans became opioid-addicted starting in the mid-’90s, is because doctors began to prescribe very aggressively.”
The epidemic began in 1996, when drugs like OxyContin hit the market and opioids were prescribed not only for terminal illnesses like cancer treatment but for relief from even routine pain, such as a toothache, instead of an over-the-counter NSAID. The national movement to reel in prescriptions, however, has left some patients in so much pain they attempt or commit suicide when their drugs are taken away.
“We were taught that opioids are safe and effective for common chronic conditions like lower back pain; we were told to give opioids,” reflected Koldony. “Chronic headaches — we were taught to give opioids. Fibromyalgia — we were taught to give opioids. You are much more likely to harm the patient than help them If you prescribed opioids aggressively like that.”
He also blamed the ongoing crisis on drug companies like OxyContin manufacturer Purdue Pharma and their “brilliant, multifaceted marketing campaign disguised as education.”
“The answer there isn’t so much restricting what doctors can do,” said Kolodny, “the answer is restricting what drug companies can do. We need better regulation of the drug companies so that the doctors can make the decision on the basis of medical evidence without drug companies influencing what they’re doing and giving them deceptive information.”
Currently, Purdue Pharma is being sued by the Massachusetts attorney general, who’s accused the company of misleading doctors into prescribing potentially addictive OxyContin. According to court documents released mid-January, Purdue executives planned to “bury the competition” in a “blizzard of prescriptions” and blamed the crisis on abusers, who they referred to as “reckless criminals.”
Yet the fight against the opioid epidemic has fallen squarely on doctors’ shoulders.
“To protect public health, we must continue to improve opioid-prescribing practices,” wrote Dr. Gery Guy, a health economist at the CDC, in an email to Yahoo News. “Almost all prescription drugs involved in overdoses come from prescriptions originally. … However, once they are prescribed and dispensed, prescription drugs are frequently diverted to people using them without prescriptions.”
The CDC guidelines for prescribing opioids provide recommendations that are “are voluntary, rather than prescriptive standards,” said Guy. Still, as of last year, over a dozen states have turned the guideline’s dosage and duration limits — “start low and go slow” — into laws. In many cases, they are indiscriminately applied to all chronic pain patients, despite being unsuitable for people with cancer or other certain serious illnesses. The risk of addiction then outweighs pain relief for someone with a terminal disease.
The CDC says it has documented a connection between prescribed opioids and illicit drugs. “Opioid overdoses related to prescription opioids and heroin have taken the lives of too many Americans,” said Guy. “In 2017, prescription opioid overdose took the lives of 17,087, heroin overdoses took the lives of 15,482, and synthetic opioids other than methadone (such as illicitly manufactured fentanyl) took the lives of 28,466 Americans. These epidemics are closely related. The dramatic increases we see in opioid overdoses are a tragic consequence of exposing too many people to prescription opioids.”
It is this “crossover,” as Cresta put it, that stigmatizes legitimate opioid users as drug addicts.
But a just-published study projects that “interventions targeting prescription opioid misuse such as prescription monitoring programs may have a modest effect, at best, on the number of opioid overdose deaths in the near future.”
“Even patients who have been on therapeutic doses of opioids for a long time, with no evidence of other problems like substance use disorders, are being involuntarily tapered because physicians or other prescribers are afraid,” said Kelly Dineen, co-director of the Bander Center for Medical Business Ethics at Saint Louis University. “It’s not great for anybody to have an opioid use disorder no matter what the substance is. But, frankly, it’s probably less dangerous to have opioid use disorder when you’re using prescription drugs because at least there are quality controls on that.”
Beyond prescription limits, the CDC guidelines recommend technological surveillance like prescription drug monitoring programs (PDMP) that track which drugs are prescribed and dispensed to whom, how many and how often. The data is sent out in report cards, comparing doctors to their peers and influencing them to be more conservative with their prescription pads.
“They were meant to inform primary care physicians on what would be reasonable,” said Halena Gazelka, a practitioner of pain medicine at the Mayo Clinic, about the CDC guidelines. “But when we try to make absolutes out of them, that this is all you can give a patient and this patient is the same as another patient, it just doesn’t work because medicine is so individualized. And it has to be.”
Gazelka argued that the guidelines are based on data that may not capture the full spectrum of opioid users. “When someone comes in with an overdose, we don’t necessarily know whether they’re taking a prescription that they were given or that their mother was given or if they bought it on the street,” she said. “Trying to separate that out, where the prescriptions end up and who is really dying from them, is really difficult.”
Donna Meyer, a nurse and co-leader of Investors for Opioid Accountability, a coalition that scrutinizes the role of pharmacies like Walgreens in the opioid crisis, agrees with Gazelka’s critique but believes common sense restraint is warranted. “There shouldn’t be any dictator dictating how doctors do things, because every patient is different,” Meyer told Yahoo News. “But on the other hand, there should be guidelines and we should not go back to the ’90s, where we just gave 90 opioid pills to someone who broke their little finger.”
Cresta has tried non-opioid alternatives for her bone-breaking spasms, some of which have recently deformed her feet. “Plasmapheresis, IVIG (intravenous immunoglobulin) therapy, out-of-pocket stem cell trials,” listed Cresta. “Anything you can think of, I tried it.” But time and again, opioids, she said, proved most effective for treating her disease.
“The past three months I’ve had a brutal problem at the pharmacy,” she said, as she recalled a 13-hour day when she attempted to fill a prescription. A number of pharmacies have either refused to fill prescriptions for her or claimed the drug was out of stock.
“Nobody wants to bounce between pharmacies because you don’t want to be questioned, and you don’t want to be made out to be a criminal,” said Cresta. “But when you have pharmacists today that look at you and say, ‘I’m refusing to fill that,’ and that’s the only thing keeping your bones from breaking, there is no choice.”
Even at the hospital, Cresta has faced reluctance to administer opioids. “I could go to the ER, and the ER doctor that I had established a relationship with over time knew what they had to do,” she said. “They had to administer IV opioids quickly, one on top of the other, and they could break the spasm. It saved my life multiple times. But I don’t have that option anymore because nowadays ERs don’t treat pain and a lot of them do not want to give out opioids.”
Cresta said her prescriptions are routinely flagged by the PDMP system, which exists in some form in every state except Missouri. She has sometimes paid for her medication herself when her private insurance wouldn’t cover the cost.
Cresta became a pain advocate after posting a video to her YouTube channel, “outing” herself as someone living with chronic pain. “Everybody has an idea of a chronically ill patient as being disheveled and unstable and mean and they’re sitting in piles of dirty laundry, rocking back and forth, being hypochondriacs,” she said. “It’s very hard to sympathize with that image.”
She expected “people whose whole life is devoted to getting rid of opioids,” to respond to her video, but instead was flooded by messages from supporters who felt validated by her story, including some who were struggling with thoughts of suicide.
“Being chronically ill without the opioid issue is isolating,” said Cresta, who literally understood the pain of her viewers. “Then you add the opioid [fight] and it’s a really dark world for so many because we know that this the only way that we can survive.”
Cresta’s husband, Ryan, who is a veteran, had to stop working to take care of Cresta and their 5-year-old son after she began having trouble getting her prescriptions filled. They are being helped by their families. “I’ve been really fortunate,” said Cresta. “But family help runs out; it doesn’t last forever.”
Still, Cresta counts herself as lucky. “I am so grateful that I have a doctor that hasn’t abandoned me,” she said. “You don’t only have fear for yourself, you have fear for these physicians … and also for their families who they have to support. This mountain of fear that just never quite goes away.”
Whether it’s to put on makeup, record a video, or have a five-minute appointment turn into a four-hour ordeal, everyday Cresta makes a point of getting out of bed no matter how much pain she is in. “The first day I don’t get out of bed is the last day I’m going to be able to,” she said.
She continued: “A day in the life is pain. It’s fighting; it’s pushing. But the really important part is that I still have a day in the life because I have an opioid prescription. I wouldn’t otherwise.”
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