Category: Disability and Chronic Illness

A Rock and a Hard Place: Pain Patients Suffer from Heroin Laws Fallout

Good, law-abiding people are suffering severely in the fallout from recent state and federal laws. Designed to curb heroin addiction, these laws and prevailing societal views all begin with the false assumption that prescription pain pills like Vicodin and oxycodone are entirely to blame for rising heroin and fentanyl abuse rates.

Chronic pain patients, including many elderly and disabled citizens, often feel treated like criminals. What follows is a personal account of what chronic pain patients have to go through to obtain legitimate prescriptions from legitimate, experienced doctors, that enable them to participate more fully in life.

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“Disabled,” Photo credit: User afri.on Flickr.com

A woman, perhaps in her late sixties, wears a tan sweatshirt with the simple, humorously ironic message, “Sarcasm Society: Like we need your membership.” She sits next to her older friend, a frail, bent woman in a wheelchair with a quilted coat draped over it. The “sarcasm” lady unfolds a newsletter, leans close to her friend, and reads. The older woman smiles as she listens.

Nearby, another couple sits; a tall, middle-aged man in military fatigues plays a game on his smartphone while his mother jokes and tells him the family news. He chuckles good-naturedly, but never takes his eyes off his phone.

At the other end of the room sits an older daughter with bushy red-orange hair in a large ponytail, and her thin, elderly father who tries to sit straight and tall with the help of his cane. He wears a black leather jacket and ball cap, and mutters something quietly. “Don’t talk like that!” his daughter admonishes. Then more gently, she says, “You’re over-thinking again…”

This long, narrow waiting room is stuffed with people. People in pain. People like me. At 33, I am perhaps the youngest person in the room. A single TV is mounted above my head, showing President Obama’s last question and answer session with reporters. A lanky black man in a golden velvet pantsuit sits near me. He stares at the floor and listens to the interview. There are many others. Some busy themselves with cell phones; some lay their heads back against the blue wall and close their eyes; one lady reads a colorful, worn-out magazine. Everyone is tired. No one wants to be here.


Once again today, I fight a rising panic that this time my surgery pain will not be treated. This time I will be told about yet another hoop I have to jump through, yet another bill I will have to fight with my insurance over. My husband points out a new sign in the office, “As of June 1, 2016, all self-pay patients will have an increased payment from $85 to $100 per visit.”

My stomach begins to hurt, and I feel like pacing. I watch the enormous clock on the wall beside me, the only decoration in the low-lit room. My appointment was scheduled for 2:45pm, we arrived at 2:35pm, it is now 3:20pm. The cushioned seats smell of stale smoke, and my husband complains of a headache. I shift in my chair but can’t get comfortable.

New laws require these appointments every month, as opposed to the previous 3-6 months, for those prescribed opiates, but every appointment is a real burden on those called chronic pain patients (*pain lasting longer than 3 months). Cost and rising insurance deductibles notwithstanding, most of these patients have to find rides and a helper to get in and out of vehicles, and in and out of the doctor’s office. These patients are physically weak, and have to juggle exhaustion, pain, and a variety of medical devices like canes, walkers, braces, and wheelchairs, not to mention purses, coats, and something to occupy the time.

Helpers and/or drivers have busy lives too, and most of them work full time. These appointments can take hours, and do not include additional appointments for physical therapy, regular doctor appointments, specialized doctor appointments (there may even be 2-3 different doctors), lab work, hospital visits for x-rays, MRIs, and CT scans, dentist appointments, and more. All of these appointments require driving and walking assistance. My husband has taken a half-day vacation today. He has been warned by his boss he has taken too much company time.

The nurses and doctors and office staff all work remarkably fast. They are used to this rush of slow-moving people and have a system. I am so deeply thankful for this place of last resort. Recent laws have prevented surgeons from treating surgery pain past three months, even for major surgeries in which recovery can take a full year or more, like my spinal fusion. Although I had referrals from both my doctor and surgeon, after calling over a dozen pain clinics in my area, this is the only one that would take me in. I was told several times the office I’d called did not work with surgery patients. Only a few local clinics are staffed by actual pain doctors. The rest are headed by anesthesiologists, who do not seem to understand the needs of post-surgery patients, or feel prevented by federal and state laws from prescribing opiates.

Due to a major uptick in DEA arrests, license revoking, and heavy fines, regular doctors refuse to prescribe opiates anymore.

The majority of pain clinics likewise either outright refuse to prescribe opiates, or resort to “prescription hopping”, changing a patient’s medication every month to avoid meeting quotas that will likely arouse government suspicion*. This results in potential side effects for patients, some of which can be very serious, as well as expensive medication bills.


I squirm in my chair, realizing I need to go to the bathroom, but I have to wait in order to take the drug test. The drug test that cost my insurance $3500 per test. The drug test which has to be sent to an outside lab for rigorous analysis. The drug test I had to have at every visit at my previous pain clinic to prove I was not abusing my medicine or taking street drugs along with it. Though my medical record and scars should prove my case, at my last visit, my doctor told me the drug screening was also to prove I was the one taking my medicine, and that I was in fact taking it. Although the legal, societal, and medical pressure is immense to be off opiates, I could be kicked out of the pain clinic for not taking my medicine exactly as prescribed, even if I wasn’t taking it, or needed it less often: “Every 4 to 6 hours, no more than 2 max/day.”

I’ve been dropped from a pain clinic before. No test ever came back positive for abuse, and no stated reason was given. My appointment for that week was canceled meaning no prescription for the next 30 days, and no referral, no information, no medication to wean and thereby prevent or reduce withdrawal symptoms was given. The month prior, they had put me on an ER (extended release) hydrocodone that I didn’t want to be on; I was very slowly getting better and wanted to begin lessening my dosage. I needed to get active and strengthen my body, but moving more than a few steps was acutely painful and exhausting. Without pain management, physical therapy was out of the question: I couldn’t even ride in a car more than 5 minutes without tears.

Still, the extended release medications, lasting 12-24 hours, and meant to curb addiction, made addiction more likely as I couldn’t wean off and my body became used to having the medicine around the clock. I called addiction clinics for advise on what to expect, I searched the internet for help in deciding my next steps. No one seemed to know what to do. After several days of highly unpleasant symptoms (including psychological ones such as suicidal thoughts), and being tossed back and forth between my doctors’ offices like a dirty ball that no one wants, I was advised to go to the ER for complications of opiate withdrawal. The doctor there heard my story and sighed deeply. She shook her head, “Everyone is so afraid of these medications now, people like you are getting caught in the cross-fire.”


Back in my current doctor’s office, the testing bathroom is curious. It has no lock on the door, no water to wash with at the sink, and large signs stating that you are not to flush. That job is left to nurses, after they have examined the contents of the toilet. It has always been very difficult for me to give a sample. My back was terribly swollen for months, and bending at all was out of the question for half a year. No other helper could attend you during testing, but a certain amount of urine is still required.


My name is called, I talk with my doctor. I am very proud of the progress I’ve made in healing since my last appointment. I can now handle long car rides, I finally got to visit
family who live 6 hours away for Christmas, I even did a little yard work during a warm spell last week. I haven’t been able to do these things since a year before my surgery last December, and I am so thrilled. I am getting better! To all this, my doctor merely gives a stiff warning not to overdo things, that she cannot increase my medication, and that if I still need medication by my next appointment (regardless of progress in healing), I will have to undergo other procedures or lose my place at the clinic. We have talked about these procedures before. They are very expensive, invasive, painful, and have mixed results, but legally, doctors are not allowed to continue medication alone, even when there is evidence it is helping. If my body does not heal according to a timeline unknown to me, I and my doctors will be forced into this procedure.

I walk down the winding hallway of exam rooms towards the exit, make another appointment, and sit down once more in the waiting room for my prescriptions. 3:45pm. My last month’s prescription cost over $40 with insurance. My oldest daughter needs new clothing. My husband needs new glasses. My son’s class is taking a field trip next week and the fee is due tomorrow. 3:55pm. I’m so thankful my dad lives nearby and is a willing and able babysitter for my three children. 4:05pm. “Mrs. Lawrence,” I walk over and check my scripts, thank the nurse, and turn around to gather my things. I glance around once more at the still-full room. Unlike me, most of these people will not get better. Unlike me, most of these people have serious and/or multiple medical conditions.

This is compassion? This is freedom? This is the state of modern medicine.


Additional Resources:

A ‘civil war’ over painkillers rips apart the medical community — and leaves patients in fear

http://america.aljazeera.com/opinions/2015/12/dea-crackdown-on-pain-meds.html

*Photo by, https://www.flickr.com/photos/cacis/

https://llawrenceauthor.wordpress.com/2016/03/13/on-opioids-one-year-after-dea-reforms-part-1-of-2/

https://llawrenceauthor.wordpress.com/2015/04/06/wackydruglaws/

Strangulation on Medicine: My Life as a Pain Patient

Imagine, if you will: Waking up morning after morning, with sudden, inexplicable, extreme pain in one side that leaves you bedridden for a few hours, then a few days, a few weeks, a whole year.

Imagine not being able to find the source of the pain. Spending every week with a different doctor. Spending at least $200 on each doctor. Trying at least one new prescription every month. Spending at least $30 on each prescription. Watching the medical bills pile up, knowing you are the sole cause of each one.

IMG_9121_1a_watermarkImagine watching your young children struggle to learn to live without you. Being unable to volunteer at your child’s school because, although you have the time, you don’t have the physical stamina. Being unable to attend most school events, and seeing the disappoint on your children’s faces when you have to tell them, “I’m so sorry, baby, Mommy just can’t do it.” Spelling bees, science fairs, choir concerts, end-of-school picnics, and most painful, 5th grade graduation.

Imagine seeing your spouse become literally bent over and graying early under the stress of being essentially a single parent, plus the stress of being a full-time adult care-giver, while holding down a full-time job, and doing all the cooking, cleaning, and fixing, while also going to school part time.

Imagine being unable to visit your beloved, aging grandparents who live 5 hours away. Or being unable to visit best friends who live 1 hour away. Being unable to attend weddings of dear family and friends because they are “too far away” at 30 minutes to 1 hour. Being unable to travel more than 15 minutes by car. Being unable to walk more than 10 minutes-on a good day.

Imagine being a house-bound invalid at age 31, feeling your muscles becoming a little weaker every day. Swallowing your pride to buy a cane, and using that cane (in public) to support your bad leg on those lucky days you do get out. Imagine shopping for electric wheelchairs since not walking seems to be the new normal, and you are being driven crazy from being stuck inside for so long. Imagine shopping for walkers at age 31. Imagine the embarrassment of personally knowing many people, twice your age, more active than you.

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Me, my dog, and Poe. This is where and how I spent much of my life for 2 years.

With “Care” Like This…

Imagine having your insurance company refuse to pay for things that might shed important light on your problem, or help make it better. Things like MRIs, prescribed back braces, insurance-required physical therapy, any number of expensive drugs or treatments.

Imagine having your primary care doctor whom you’ve known for 7 years, refuse to treat your pain, because new laws prevent him. Imagine him suggesting you are overreacting,and your pain can’t be as bad as you say, even though he just looked at your x-rays and declared your problem will never get better, and cannot be fixed.

Imagine your doctor prescribing a medication that does nothing for your pain, but causes brain dysfunction in the form of a manic episode. Imagine that when you tell your doctor this, he suggests you see a chronic pain specialist who cannot see you for at least 1 month, will insist on giving you invasive, risky, epidural (link) injections that may or may not help your pain, but are terribly expensive and painful.

Imagine your doctor, after telling you you will not get better, brushing off your request for disability papers because you are “too young”. Imagine your doctor brushing off your request for an expert opinion in the form of a neurosurgeon referral, or brushing off your request for further testing.

Imagine, if you will: Being unable to think or work. Imagine feeling so very tired all the time, or anxious too often, or deeply depressed. Imagine feeling worthless, no, more than worthless, a real burden on the ones you love most financially, emotionally, mentally, and physically. Imagine wanting to end your life, and planning it, at least once a week. Imagine crying for hours at a time, because there seems to be no end to the pain, the frustration, the uncertainty, the bills.

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The Solution to Your Problem is Simple…

Now imagine, if you will: At the end of the year, finally having your chiropractor (whom you have been seeing for insurance-required, but not insurance-paid physical therapy) order an MRI. Imagine, after a fight with your doctor who was annoyed you went over his head and had an MRI, while also insisting on a neurosurgeon referral, finally landing a doctor who reads the x-rays and MRI, understands your problem and (could it be possible after all this time!?) fix it.

Imagine hearing the news you were dreading, that you will need a spinal fusion (a major, delicate surgery, with a long recovery) and discectomy; that your lowest vertebrae are separated, and have been for years and years; that this has allowed a spinal disc to slide out of place, forcefully compressing a nerve; that this is the cause of your inability to walk, to ride in a car, to sit comfortably, to sleep through the night, to live well. Imagine scheduling your surgery and feeling like all the pieces are finally falling into place; there is a light at the end of the tunnel!

Imagine, if you will: A slow recovery that begins with immense pain and not being able to walk, to dress yourself, to bathe yourself, to lie down, to sit outside. Imagine feeling very old and very frail. Imagine every month expecting to turn an invisible corner in pain relief, energy, and movement ability, but only seeing little, gradual bits of progress here and there. Imagine that month 3’s post-op big accomplishment is going to the store (accompanied by a driver, because you have hardly driven in well over a year), by using the store’s electric cart and your back brace. Image month 4’s big accomplishment is making it through a brief session of physical therapy without needing a 3-hour nap afterwards.

The Right to Suffer:

Imagine everything you do/can do depends on how well your pain is managed: Getting necessary and wanted exercise; getting (finally) out of the house; getting around the house; sleeping through the night; doing a few light chores; having the energy and ability to focus on things you love like reading, playing board games with the kids, having visitors over, sitting in your garden swing, or just laughing.

Now imagine, if you will: Your surgeon, the only one familiar with your case, your surgery, your history, not legally being able to manage your pain after just 3 months. Imagine being referred by your surgeon to your primary care doctor, who refuses to treat your pain (but only tells you that after an office visit), and refers you to a chronic pain specialist who cannot see you for at least 2 weeks, who has little knowledge of how to treat acute (short term and surgery) pain, who has little knowledge of spinal fusions or surgeries in general, who changes your medication 7 different times in 3 months, who prescribes super-expensive medicines that you cannot pay for, who prescribes medicines that make you so sick, you are either in bed or in the bathroom all day, meaning your spouse must work from home to watch the kids, making you worry about his job security, which makes you anxious for how to feed your kids.

pain scale

Imagine this chronic pain specialist under-medicates you for 3 months, insists on treating periodic, break-through pain with 12 and 24 hour narcotics which make you sick, which are MORE likely to produce addiction. Imagine, that despite doctors’ promises about proper pain management, when you finally refuse to be a guinea pig anymore, and ask for the simple, effective, economical medicine option, you are treated like an addict despite all the urine tests you’ve taken to prove you are not, despite the good faith contract you signed at the office just to be seen, and despite all the paperwork that double-checked your claims, medical history, and medicines across your entire provider network–hey, whatever happened to HIPPA laws?

Doctors said that the vast majority of the patients who need pain medications don’t abuse them. Source

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The way is shut.

Imagine having a pain specialist who you cannot get in touch with for 3 days when your latest prescription, filled only 3 days prior, gave you diarrhea, chills, major migraines, insomnia, and finally a psychotic episode in which you cried for 3 hours and stormed out of the house at 5am, pacing the front yard like an animal as your spouse watched horrified from the front door.

Imagine having a pain specialist who accuses you of breaking your signed pain contract with them, because you told them in order to make it through the weekend, you had to cut old medicines from right after the surgery in half, since you couldn’t get in contact with them. Imagine having to tell them this, because at first they thought you hadn’t taken anything over the weekend, therefore you didn’t “need anything now”. Then imagine them dropping you as a patient like a hot rock.

Imagine:

Without pain management, not only can you not do what you need to or want, you begin to get cranky. You lash out at your kids and spouse without reason, like an animal in pain, because that’s what you are. Imagine finally collapsing into a tired, depressed heap, contemplating the cleanest ways to end your life, to end this pain for good.

Imagine:

  • Knowing that government officials who don’t know you, who are not doctors, who don’t see your pain, assume you will abuse the legitimate medicines that make life livable for you.

  • Knowing that these officials have made it effectively, though not “technically”, impossible to get what to you, is truly a life-saving medicine.

  • Knowing that the “stats”, “facts”, and “research” that are behind the new laws that have made it impossible for you to get help, are very, very skewed and without actual merit.

  • Hearing glib, pain-free people cheerfully announce that exercise, meditation, and a funny movie will remove their pain as well as any pill.

  • Knowing that real drug abusers who have been breaking laws, can get their addiction meds, often free, while your legitimate, provable, documented, legal medical condition is treated with contempt by law makers. *Sign a petition here!

  • Knowing that pain patients all over America, “the land of the free”, are needlessly suffering so that some politicians can look good in photo ops and in newspapers.

  • Knowing that we don’t allow animals to suffer like the laws have made actual people suffer.

  • Knowing that pain patients have a small voice, because they are too broke from trying to follow the burdensome laws suddenly imposed on them for things outside of their control; because they are too tired from fighting pain and doctors all day, all week, all month, all year long, to use the last of their energy to make their voices heard in politics, rather than spending time with family.

Imagine:

Spending all day trying to find another pain specialist, but being told by the first promising 4 they would not take acute pain cases, and could not recommend any one who would. Imagine calling your surgeon, desperate for help but being told their hands were legally tied. Imagine calling your primary care doctor, but being told they would not do anything, and to go to the ER if the pain “was that bad” (it’s not; you don’t need morphine injections, you just need something a bit stronger than acetaminophen, and you certainly don’t need an extra $6,000 medical bill).

Imagine not being able to take even ibuprofen, per your surgeon’s instructions, or being afraid of liver damage from too heavy acetaminophen use, or being on the phone for 5 hours, trying to find someone, anyone who can or will help.Imagine hanging up exhausted at the end of the day, and having nowhere to turn.

While nerve pain seeps into your side, your muscles begin to stiffen, and you desperately try to ward off an aching back and tailbone (you know, those parts that were recently severed and have bones, new hardware, and deep tissue working to heal) by sitting on an ice pack. The ice pack your now-defunct pain specialist told you not to use (although your surgeon recommended it), along with discontinuing those muscle relaxers your surgeon prescribed.

Imagine all this, if you can…

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Take a walk in my shoes

See also: On Opioids: OneYear After DEA Reforms and On Opioids: America’s Drug Addiction and the Wacky Laws that Perpetuate Them


*If you liked this post, please consider subscribing to my blog for just $1.50/month.


 

Take Action Now!

Garnering Support for Pain Patients, Media Sample Letter

Garnering Support for Pain Patients, Political Sample Letter and Petition


Learn More:

Opioid Epidemic, Drug-Mix Overdose Death

Pain Care Shouldn’t Be Political Theater

On Opioids, One Year After DEA Reforms

It’s been nearly one year since my researched article on the heroin epidemic (link) in my city, and I’ve been keeping tabs on the results of the DEA’s new prescription opioid reforms. How have things have panned out for pain patients, and opioid and heroin addicts in the past year?

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“My Little Chinese Book”, by Mary Audubon, 1912. Image courtesy of The British Library Catalogue

Two years ago, National Pain Report, a patient advocacy group, published an article predicting what might happen after the DEA’s reforms were passed.

“Pain management experts say the rescheduling of hydrocodone by the U.S. Drug Enforcement Administration could have many unintended consequences, including higher healthcare costs, as well as more suicides, addiction and abuse of opioids. Many physicians may also refuse to write prescriptions for hydrocodone products, fearing fines or prosecution.”

All they predicted has happened, and more. Drug rationing (see here and here) for pain patients, some of whom are cancer patients, has been a major problem especially in Florida, which in addition to having a higher (nationally) number of opioid abusers, also has a higher number of elderly and sick. *Update: I recently heard a rumor that a documentary is being made about the Florida issue.

“[Pharmacist] Bill Napier, who owns the small, independent Panama Pharmacy in Jacksonville…says he can’t serve customers who legitimately need painkillers because the wholesalers who supply his store will no longer distribute the amount of medications he needs. “I turn away sometimes 20 people a day,” says Napier.

Last year Napier says federal Drug Enforcement Administration agents visited him to discuss the narcotics he dispensed.“They showed me a number, and they said that if I wasn’t closer to the state average, they would come back. So I got pretty close to the state average,” Napier says. He says he made the adjustment “based on no science, but knowing where the number needed to be. We had to dismiss some patients in order to get to that number.”

According to Napier, DEA agents took all of his opioid prescriptions and held on to them for seven months. Napier hired a lawyer and paid for criminal background checks on his patients taking narcotics to help him decide which ones to drop.” (source)

In this one-year post report from Northern Ohio, another state that has been hard-hit with opiate addictions, a lot of facsimile changes were made in local laws, which resulted in anywhere from no changes, to an increase in heroin use. Thankfully, this report specifically mentions heroin as the drug to be battling against, rather than other articles and news reports, including recent comments from President Obama, that have made pain patients out to be drug abusers, by default. They group heroin use/abuse with anyone taking an opioid for any reason (see here and video here).

While the DEA has succeeded in reducing the number of opioid prescriptions by strong-arming doctors and pharmacies, they have condemned chronic pain and surgery patients to depression, exhaustion, high levels of mental and physical stress, brain shrinkage, trouble concentrating and making decisions, insomnia, and anxiety, all side effects of uncontrolled chronic pain. As a result of these stressors, it remains to be seen (for lack of hard numbers) if the suicide rate among chronic pain patients, already known to be twice the rate of non-chronically-pained patients, has indeed gone up (source). But what has the DEA done about opioid abuse on the street? What have they done to stem the ever-rising tide of heroin trafficking and use? What have they done to reduce the rate of prescription abuse, not just use? Not one thing. What viable alternatives for pain patients have been produced in the past year?

New York Opium Den

New York Opium Den, 18__


In the middle of all this madness, is a push for new (supposedly non-addictive) drugs and treatments. Unfortunately, these new treatments tend to be very expensive, are more invasive, have mixed rates of effectiveness, and are rarely covered by insurance. One news article blithely claimed (using new CDC guidelines) that boosting endorphins via exercise was on par with taking narcotic pain medicine. What they failed to keep in mind is that those who are elderly, sick, or disabled, or those recovering from surgery, may not be able to exercise, especially if they’re in pain! While this same video also recommended OTC pain meds like Tylenol or Motrin, one main reason chronic pain patients are prescribed opioids in the first place, is to avoid the associated and well-documented kidney, liver, heart, or stomach damage from high and/or prolonged use of OTC medicines.

“The misguided, insensitive and inhumane policies of our government and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform.

…All of us are only one injury or diagnosis away from being crippled with pain.  Think of living every day with a toothache that won’t stop, an untreated broken bone, or surgery with no post-operative pain relief.

People are living with untreated pain every moment of every day because of government over reach and inhumane DEA policies. It must be stopped and it must be stopped now.” (Source)

As if this weren’t enough, there have been several politicians in the past few weeks advocating for even further restrictions on prescription narcotics. Vermont Governor Peter Shumlin (D) and Kentucky Gov. Matt Bevin (R), are now pushing for even more legislation that will keep pain patients (who have a difficult time as it is getting around) from receiving more than ten pills at one time. Shumlin wrote, “opioid medications, as we know them, must be made obsolete”.

If this war on opioids has resulted in the predicted effects of more illicit drug abuse, of more patients in desperate pain, of an increase in deaths related to drug overdose and suicide, in more frustrated doctors and pharmacies, and an increase in healthcare costs,  it seems clear these new laws have helped no one, and hurt millions. Or have they?

See also: Strangulation on Medicine: My Life as a Pain Patient

*If you liked this post, please consider subscribing to my blog for just $1.50/month.


Sources in order of appearance

https://llawrenceauthor.wordpress.com/2015/04/06/wackydruglaws/

http://nationalpainreport.com/a-worried-dad-pain-patients-need-to-unite-for-dea-reform-8819510.html

http://www.pbs.org/newshour/updates/americans-spend-much-pharmaceuticals/

http://wellescent.com/health_blog/the-damaging-effects-of-chronic-pain-on-the-brain

http://commonhealth.wbur.org/2015/11/chronic-pain-suicide

http://america.aljazeera.com/opinions/2015/12/dea-crackdown-on-pain-meds.html

Pain Patients Say They Can’t Get Medicine After Crackdown On Illegal Rx Drug Trade

http://abcnews.go.com/US/prescription-painkillers-record-number-americans-pain-medication/story?id=13421828

http://www.painnewsnetwork.org/stories/2015/9/16/cdc-opioids-not-preferred-treatment-for-chronic-pain?rq=preferred

The Magic of Memory Wire Demo: A Great Tool for those who Struggle with Traditional Clasps