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Get Involved: CDC Opens Comments for New Opioid Guidelines

The Center for Disease Control is taking public comments until January 13th about their guidelines on opioid prescribing. While the majority of the guidelines are targeted at general practitioner who have had less education on who and how to prescribe these pain drugs. Below is the letter I wrote. Please feel free to copy and use certain paragraphs if you wish to weigh in on his matter. Deadline is this Wednesday!

National Center for Injury Prevention and Control

Centers for Disease Control and Prevention

4770 Buford Highway NE., Mailstop F-63

Atlanta, GA 30341

Attn: Docket CDC-2015-0112

Agency: Centers for Disease Control and Prevention (CDC)

Parent Agency: Department of Health and Human Services (HHS)

January 9, 2016 (via email)

To Whom It May Concern:

Opioids are often prescribed to Chronic Migraine patients, of which there are 4 Million Migraine patients that fit in this category. Opioids tend to be the last resort after trying a plethora of preventative and abortive medications. This population experience more than 15 headache days per month. Many never have a day without pain. Opioids do not cure Migraines because there is NO cure at this time. Opioids help patients to relieve the constant pain. The Migraine community is concerned that access to opioids will be restricted even more with these new guidelines.

In 2014, the US National Institutes of Health spent $0.55 per migraine patient on research. Meanwhile, for each person diagnosed with Multiple Sclerosis the research is funded at $291.42. There are 400,000 individuals with MS in the United States compared to 36 million Migraine sufferers.

I have been plagued with Chronic Migraines since 2011. I never have a moment of relief, but over time have learned to manage the pain more effectively. I worked for 15 years in the community banking industry as a VP of commercial real estate lending. After trying many therapies both medically and naturally with the top headache specialists in the US, this disabling disease left me unable to return to my beloved job. In 2013, I was awarded Social Security Disability Benefits. Along with other medications, both preventative and abortive, 5mg-325mg of Percocet is a drug that I use about once a week when pain levels spike over 7 to 9 on a 10 pain scale.

Realizing that you should never let your pain go to waste, I pivoted to become a writer and patient advocate for Migraine.com to share my experiences with hundreds of thousands of patients who use our social media. My motto is “Living a Fulfilled Life While Managing Chronic Migraines.” This is not an easy task, but one that I strive to achieve daily. I also believe in a balance of medication (including Percocet) and self-healing measures such as yoga and deep-breathing. I have successfully used long-term opioid therapy for 4 years without becoming either dependent or addicted to the drug. I am not the only one who responsibly uses opioids.

The CDC Guidelines state that “almost 2 million Americans, age 12 or older, either abused or were dependent on opioid pain relievers in 2013.” However, this number is inflated because there is a difference between dependence and addiction. The National Institute of Drug Abuse states that addiction constitutes “failure to meet work, social, or family obligations; and, sometimes (depending on the drug), tolerance and withdrawal. “ While with dependency “the body adapts to the drug, requiring more of it to achieve a certain effect (tolerance) and eliciting drug-specific physical or mental symptoms if drug use is abruptly ceased.” Simply put, dependent users are functional with minimal issues during withdrawal, while addicts do not contribute to society and become physically sick without its use. There is a difference between dependency and addiction, therefore the 2 million number is misleading.

The CDC clearly has a bias against opioid usage by sponsoring a social media campaign called “When the Prescription Becomes the Problem.” Absent from the CDC website are stories of people who have responsibly used long-term opioid therapy. There is no dispute that opioid use can turn into addiction, which can then turn into a heroin addiction. 14% of opioid users graduate to using heroin. Not publicized are the other 86% who responsibly used these medications.

By no means am I dismissing the need for better controls when prescribing opioids. I personally have a friend who is currently in rehab due to an opioid addiction that turned into a heroin addiction. Educating primary care physicians is crucial. Drug testing, frequent doctor’s visits to monitor use, explaining risks to patients and using pain contracts are all great examples of changes that need to be made in our healthcare system and are addressed in the Guidelines.

There is no mention of creating a national registry of opioid users that would decrease the number of abusers who doctor shop or go to multiple pharmacies across state lines to obtain additional pills. Some states have created their own registries but only a nation-wide program could have the biggest effect on the fight against addiction.

I urge the CDC to consider the patients who responsibly use opioids to manage their chronic pain issues and not to focus solely on those who become addicts. Restricting access through these guidelines will leave more people in constant pain while their quality of life suffers.

Sincerely,

Katie M. Golden

 

Do you feel the same way I do? If you are so compelled, please take the time to send your comments to the CDC. Below are the links you’ll need to submit your response. And again, feel free to steal anything I’ve said (except for my personal experiences).

More information:

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • chipdooley
    3 years ago

    I am fighting with doctors for the last 18 month’s on getting my meds for chronic migraine’s(W/C accident using chemicals and have had chronic migraine’s since 1992), chronic pain’s (broken back and neck a few times, fibro, neuropathy and about another 20 illnesses(every time I go to a new doc they always find something new) Last group was last November and they found stage 4 cancer and I am still having a hell of a time getting my meds, last 2 month’s went from 4 scripts down to 1 and only about 2/3rd and take every 6 hours instead 0f 4 hours. People know that opiate’s don’t last longer than 3 hours and takes 30 to 45 minutes to kick in. But I am a drug addict because I use only 4 meds instead of 15 plus meds a month. I have been on them all and they will make me go crazy and I mean in a asshole way and it scares the hell out of me because I can back up what I say and I do not want to hurt anyone but those meds I have no control or even remember and they want me to go on that crap, even says so in warning causes suicide thought’s. When I tell them they look at me like I don’t know what I am talking about or using to get opiate’s which I hate taking but need to, to have a decent life and play with my kids, Their mom just died of stage 4 anal cancer after beating stage 4 uterine cancer 4 weeks after finding out that I have stage 4 throat cancer. Still can’t get med’s for anything besides 90, 30 mg Roxicodone( I have been using for over 10 years, need a adjustment and all they do is cut me back to where I can not get out of bed most mornings) and the FDA just said it is ok to give same meds to 11 year old kid’s. I can not get them and I am 51 years old with chronic disabilities and stage 4 cancer, guess I am really not in pain.
    Think God for marijuana and laws where changed because I have been using marijuana oil to kill my cancers and smoking dabs and buds for pain, but my grow will not be ready for another few month’s and I spent all my money(ss, 1700 a month). The oil has made my tumors that where the size of a bic lighter, now you can not see them and almost not feel them. Fun part is they want me to pay to see 3 doctors to get 4 scripts at $50 a visit on top of seeing oncologist, and few other Dr for cancer. Why in the hell do I have to go to Doctors that will only write me scripts at $50 bucks each and have to pay cancer Dr and chemo and radiation on 1700 a month with 3 kid’s to feed, clothes, house and everything else. My ex dies so no more child support (minus$584 a month) Dr co-pays about $450 a month, chemo and radiation is 100 each a month plus my meds if I ever get any from Dr or even my marijuana(is 650 a month). I can only collect my ss benefits and none from her(only can collect 1). So I loss 584 from her, co pay 450, meds don’t get them now but will so ??? on cost and pot was 650 every 10 days(savings is gone, only allowed to have 2500) Just to get help with stage 4 cancer this is what it’s costing me and just got back from welfare office for some help with food for kid’s(I get $0, but could have had a EBT card, it’s easier to tell you what I got or kid’s got. They got heath insurance and me nothing, no help and I am dyeing so the Dr tell me if I don’t get this stuff done.
    Why can people who never put 1 penny in for any benefit’s here in the USA or low income get’s help. But I make $1600 a month with 3 kid’s, what the hell qualifies for being poor? I am dyeing with 3 young kid’s and mom just died 2 week’s ago why can’t I get any help? Making to much money of $1700 a month to get any state help. But they have no problem helping illegals and law breakers, only Americans who did no wrong they have a problem helping.

  • Leynal
    3 years ago

    Wow. This letter is AMAZING….
    I’m wondering if it’s ok if I share it online? I’m assuming it is because it is here?
    Thank you for this letter. There is so much stigma around Opioid use, and although it is past Jan 13th, I think this voice needs to be heard. -Leyna

  • Katie M. Golden moderator author
    3 years ago

    Leuna,
    Please do share!
    -Katie

  • Karen Rudd
    3 years ago

    I have to add that while using extended release opiates, my pain was under much more even control, and had less impact on my personal and professional life. I wasn’t getting a sudden influx of opiates, or suffering for the last two hours before I could take take another dose. No drug high was experienced. As one doctor explained, there is a world of difference between dependence and addition. One allows you to,function, the other is a craving that cannot be satisfied. With proper dosages turn, I sleptucg better, worked more and was more ‘present’, participated in more family and social and extra-curricular events. I had less down time with attendant side effects like nausea, vertigo and visual disturbances. They happened, but much less frequently and severely. Cutting access to medicines that in many cases have been around and in use for thousands of years with chronic pain patients is a huge mistake. If doctors are breaking the law, prosecute them, but do not punish legitimately ill patients for a doctor’s greed or mistakes.

  • chipdooley
    3 years ago

    Amen wish more Dr new that, been disable since 1992 and went on opiate’s in 99 and been on since and slowly increased doses over the years. I was prescribe Oxycodone 30mg 180, Morphine 60 mg 60 a month, 90 Xanix and soma. For chronic migraines, chronic back pain, fibro, neuropathy and at least 20 other illnesses like rls, arthritis ect… every time I go to a new doctor they find something else new. Like the last time I went to a new Dr because health plan changed and they found stage 4 cancer in my throat going into lungs and stuff. Guess what meds I am getting now? 90 a month of 30 mg 1 every 6 hours of oxycodone’s, that’s it. Find stage 4 cancer so I don’t need any meds, just cancer. I don’t get a high, can stop taking any time with out with draws and stuff. When I prove to them I can stop with out any with draws they call me a dope seller. But I had pills I didn’t take, so I don’t sell them, don’t abuse them and anyone else with stage 4 cancer would get meds in a heart beat, without the disabilities I have. Don’t understand why I can’t get any, they are fucking killing me with no help to stop cancer besides my pot oil, it’s killing most but still have throat, tonsil and lypnoids (cant spell it now, brain fart)and have 2 more days on my pot oil treatment and after that I will not be able to use until my grow is done in 3 months or so. I hope I can live that long so it will help me. I have 3 young kid’s at home who’s mother just dies 2 week’s ago, I MUST LIVE 8 MORE YEARS!!!!

  • Katie M. Golden moderator author
    3 years ago

    Karen,
    I wanted to highlight a statement that you said. “As one doctor explained, there is a world of difference between dependence and addition. One allows you to,function, the other is a craving that cannot be satisfied.”
    That is incredibly true.
    -Katie

  • Karen Rudd
    3 years ago

    What I wonder is how many actually turn to heroin AFTER losing access to legally prescribed medications, or insurance that helps offset the costs of same. My understanding is that heroin, or other super addictive drugs like meth or crack cost a fraction of prescriptions. I thank God every day for Tricare. With few exceptions, my scrips run anywhere from $.89 to a max of $8.00 per month. In the early days of OxyContin or MS-Contin, with commercial insurance, it was not unusual for my medicines to run $1,000 a month.

  • MargoW
    3 years ago

    It’s a shame that the CDC is taking this ridiculous stance. I’ve been on daily opioids for year to manage chronic migraines (daily), chronic fatigue, fibromyalgia, and about a dozen or more other conditions.
    I’m not addicted as I can quit any of them at any time. I have to constantly switch them out to keep from building up a tolerance.
    I don’t get a high from taking opioids. In fact, they make me nauseous and I hate how they make me feel slow and unsteady.
    With daily migraines, if I didn’t have opioids to turn to in order to make the pain at least manageable, I would probably just give up. It’s no way to live.

  • Katie M. Golden moderator author
    3 years ago

    @Karen- Heroin is absolutely less expensive than opioids. I’d love to know the stats on patients who turned to heroin when their opioid prescriptions wouldn’t get filled.

    What I do know is that the “in 2010, 1.9 million people abused or were dependent on pain medications and 14% used heroin.” the media makes it seem like if you try an opioid once you’ll go straight to heroin. The stats disagree.

    -Katie

  • Kara
    3 years ago

    I wish I saw this prior to the deadline. I have been on controlled medications since 2012 and am not addicted to my medications. Yes, I have a high dosage, due to using the medications for a long time, but my doctor is limited in how much she can prescribe due to the controlling of these substances. I wish they would look at people’s history when they decide whether or not to increase the amount of medications that you can be prescribed. Some people disagree that I use these controlled substances (family, friends, insurance companies) but, in order to deal with my migraines that I have experienced since I was 11 years old and also due to fibromyalgia, I use these medications to control my daily symptoms. I am tired of hearing that you are addicted to these meds. I am not addicted. But if I want to have a decent day, I take them as prescribed. **sigh** I feel that it is prejudice to those of us who use the meds properly versus those who use the medications improperly. I am also a retired nurse, so this makes me even more angry. Medical treatment should be based on the individual need. Not the lump sum of humanity as a whole. If the doctor is doing their job correctly, then they are monitoring you and your medical needs properly. This “power” should be put back in the hands of the doctors and they should be allowed to prescribe what is good for the patient and their conditions, not what some “expert” states should be the “norm” for patients in the country/world. I have tried just about everything in the world that we can find to help with my migraines. They continually get worse every single day of my life and I am tired of being judged by someone who doesn’t know me or does not know my medical history. And just for transparency, I have gone without my meds in order to show how I function without them. I am no stranger to not using the medications but, this is what works for me. It may not work for someone else, but with dealing with these crippling illnesses, I use them so I can function on a daily basis. I know what they do to my body and understand the risks that I take in using them. I would rather have more good days than bad. Life is about living and living happily as best as we can. So what if I don’t live to be 110 years old. I would rather live a shorter life without as much pain and agony than a long and painful life.

  • MargoW
    3 years ago

    I understand. Everyone in my family thinks I’m a junkie and have accused me to my face. They don’t care that all my pain meds come from only one doctor and that I have to pee in a cup every month just to prove I’m actually taking my medications so I can get prescriptions for the next month. Even my daughter turned on me today because I’ve got a severe migraine and between that, the auras, and the pain meds, I’m uncoordinated and fall down a lot. I’m frowned upon because I reached the point where I cannot work any longer and everyone assumes that if I stopped taking the meds, I’d be fine. My migraines typically last 4-24 hours. I can barely think, talk or walk during this time but that’s not what they see. It’s the stigma of having a silent illness. I’d be more respected if I had cancer than the unmotivated junkie they see. I’m ostracized from the very people who should be there to support me. If it weren’t for a few tried and true friends, I wouldn’t see any point in trying to live like this. Obamacare is just making things worse and harder.
    @Leynal, I feel your pain and inner conflict. It’s a very frustrating situation for all of us.

  • Leynal
    3 years ago

    I am in the same boat. I have debated this issue a million times. To take the pill or not- but the debate in my mind is always because of the stigma attached. The guilt I carry because society and (now ex) friends have repeatedly said that pain killers are NOT ok, that it is a weak choice, that you are complacent and complicit to the disease and not fghting it, and so many other bullshit lines. When the truth is I’m not shooting up smack or doing anything to get high. I’m in pain every single day, some more than others, and if I can get a little relief should I? Guess what-I didn’t have any opioids for years and years before they were prescribed to me and I still had daily migraines.

    Sorry, a bit frustrated about the CDC trying to tighten the reigns here when more drug use will certainly be the problem… And more stigmatization

  • Katie M. Golden moderator author
    3 years ago

    @Erin, I wish you had seen this earlier too. It was a very short time frame from when I found out to when the period of comments was closed. I appreciate you being candid about your use of opiods. When taken appropriately and under a doctor’s supervision, opioids can absolutly help Chroni Pain patients!
    -Katie
    Migraine.com Moderator

  • Erin
    3 years ago

    I really wish I had seen this earlier. I receive Oxycodone for my migraines, and back pain. I’m very lucky that my GP is very aware of how I take them. My neurologist also keeps a close watch as well. I use only two doses a week for the migraines. And even less for the back pain. I keep a log of when and how much medications so I never take more than I should. Getting just this small amount was difficult. I signed a contract to get my pills. They are the reason I can get out of bed. I’m terrified that the government or DEA is going to take away my only relief. I live in a very small town in Kansas, so getting the opiods was incredibly hard to begin with. I’m sorry that everyone who could benefit from opiods can’t have access to them. They have helped me.

  • peeperview
    4 years ago

    Dammit! Today is Thursday. Great letter, by the way. Thank you Katie!

  • Katie M. Golden moderator author
    4 years ago

    Thanks, sorry you saw this too late. I found out about it fairly late too. Next time I find an opportunity to do advocacy work, i’ll pass it along hopefully sooner!

  • Colleen Meegan
    4 years ago

    I couldn’t agree more with this sentiment: “Not publicized are the other 86% who responsibly used these medications.” Being a scientist, I would like the source cited. As a chronic pain patient, I know I have needed narcotic pain medication that has been denied me re: physician prejudice & ignorance. It’s gotten so bad in south Florida that no one will assist patients in relieving their heinous pain syndromes for fear of the FDA. I actually called the FDA about physicians who stated to me that they were not allowed to prescribe pain medication and blamed it on the FDA. So I called the FDA myself (you can obtain the number online) and was told by two different FDA representatives that “the doctors are lying to you. We do not want the physicians to deny pain patients adequate pain management to pain sufferers.” So we pain victims go through life suffering because few people shoot up crack or whatever it is they do. In a word, my quality of life sucks and my movement–including just walking–is limited. Am I angry? You bet I am!

  • Susan L
    4 years ago

    Hi Colleen, I don’t know where you live in FL, but I see both a neurologist & a pain management specialist here in Deerfield Beach. My pain management specialist treats me with Botox and also prescribes hydrocodone/aced. in small amounts for me to use when my pain levels become unmanageable. I have chronic daily migraine. Have you sought out a pain management specialist? In FL, a doc has to have some type of credentials to prescribe narcotics – I should know what they are, but I don’t… You can also go to the ER if you are beyond miserable.

  • Katie M. Golden moderator author
    4 years ago

    Colleen,
    That information came from the National Institute on Drug Abuse. Here is the information I used to determine the numbers.

    Left Graph: Number of people who abused or were dependent on pain medications and percentage of them that use heroin. Pie charts show in 2004 1.4 million people abused or were dependent on pain medications and 5% used heroin. In 2010, 1.9 million people abused or were dependent on pain medications and 14% used heroin.

    Here is the website:
    http://www.drugabuse.gov/related-topics/trends-statistics/infographics/abuse-prescription-pain-medications-risks-heroin-use

    -Katie

  • Natasha
    4 years ago

    Sorry in advance, I ramble A LOT.

    I am glad you were able to write in – you really hit on some important points that need to be addressed. I am so tired of defending myself to every doctor and justifing the reason I ask for pain killers (describing the severe daily pain I am in, getting the looks of disbelief).

    I was in the ER twice recently (about a week apart). I go there when the pain is at a 9 or 10 for more than a couple days, when I can’t even eat or sleep, when I am curled up in a ball, often vomiting. It is completely a last resort and I make this very clear to the doctors and nurses, especially obvious that this is serious with my mom by my side, clear that I am not an addict, however, I am still often treated like a drug addict. One of the 2 times I had a very caring doctor who gave me a couple pain pills for at home in the hope of lowering my pain the next day too. But the other one yelled at me, repeatedly, about me asking for more than 1 dose of pain killers. When I go, I usually end up with 2 or 3 doses of pain killers, fluids, and 2 doses of nausea meds (I’m sure they can look at my chart and see this), then I go home to eat and sleep. I was crying, tears pouring down my face as she kept yelling, making my head split open. It was an awful experience, but wasn’t unusual, it has happened probably close to 40 or 50% of the time when I go. I have hoarded the few pills that the other doctor gave me, cut them up to spread them out with my fioricet (the only thing in existence that even helps a tiny bit).

    It is ridiculous that I have to lose my whole life, miss out on every single thing I ever want to do, lose every friend I’ve ever had, all because I have to stay in severe pain 24/7 (I’ve had migraines since I was 4, but now I’ve had constant pain for over a decade). Pain killers aren’t a solution or a cure, but neither is anything else in existence. They are a minor source of relief, bringing pain from unbearable levels to “normal” pain levels for me. Triptans help some people, but unfortunately I have tried every one of them, several times, and only get side effects with no relief. I am always told to take imitrex when I ask for pain killers, clearly these doctors haven’t read the research that states triptans don’t help everyone, just like all the preventatives… Pain killers might mean that I could leave my house more than just for doctors appts as I do now. I have tried everything available to me for relief, and this is the only thing that has ever helped a level 9 or 10 migraine. I just don’t want to be punished because there are addicts out there who need help (and I hope get help), I just feel like my record with never abusing medications should be taken into account when I am just asking for help… ramble…

  • Natasha
    4 years ago

    I also wish there wasn’t the idea out there that opiates are so bad for migraine patients, I completely understand the medication overuse migraines and all that, but there is a need for them still. I have actually never had a negative reaction to pain medication for my head, only relief when it is so severe (yet I’ve had severe reactions to other meds given to me). I have said many times that all I want is something I can take 1 day a week, for the worst day of the week, yet apparently that is just too much to ask for… This is so frustrating for us all. I always go back to wishing certain people could experience this pain for 1 day and see what we go through. They would be crying in a ball on the floor.

  • Natasha
    4 years ago

    Thank you everyone.

    Susan L. – Thanks for the advice, unfortunately I have done all of that so many times. Last year I had 2 specialists basically tell me to leave their office and not return because they had no other recommendations for me to try. I’ve tried basically every preventative, some of them several different times, or in combo with others. This is such a frustrating disease for all of us to deal with. It has been really difficult for me dealing with other uncontrolled pain conditions on top of this too. I have a new migraine specialist now, but she is out of ideas now it seems…

  • Susan L
    4 years ago

    OMG, Natasha, what misery you have had to endure. I feel so bad for you. I would seek out a headache specialist specifically and stick with him or her. You need to get onto some regimen of preventives – maybe even giving something you’ve tried before another try along with something to counter the side effects. But I think a headache specialist can help you and perhaps team up with someone who can help with the severe pain at the same time. You shouldn’t be “out there” just suffering.

  • Katie M. Golden moderator author
    4 years ago

    Natasha,
    I couldn’t agree with you more. It’s lack of education on the doctor’s part so they say NO rather than face the potential scrutiny of the DEA for how many opioid prescriptions they have written.

    I hope others have written in as well. Every voice matters!
    -Katie

  • Colleen Meegan
    4 years ago

    You could not have said it any better! Thanks.

  • RachelRoo
    4 years ago

    Thanks for sharing this Katie. I sent in comments as well, I used your informational paragraphs about the amount of people affected by Migraine and the amount of money that goes into research, and then added my own personal story. I depend on my rescue medication as well, and don’t want that path made more difficult because the situation is chronic. It’s a system that works! (The prescriptions are from my neuro not my GP, but we know what happens when anything becomes more restricted)

  • Katie M. Golden moderator author
    4 years ago

    RachelRoo,
    I’m so glad you sent in a comment! Thanks, every little bit helps.
    -Katie

  • Tammy Rome
    4 years ago

    Thanks for sharing! I sent my comment in, too.

  • Katie M. Golden moderator author
    4 years ago

    Awesome!

  • seanmcguire
    4 years ago

    I’ve tried every other medication the neurologists and pain specialists prescribed me for my chronic daily headaches. Some with horrible side effects that have made me really sick and/or anxious. None have worked to either prevent or abort the pain. Other pain patients laugh at me when I tell them my dose and quantity, and the response is usually “I take xx times more than that just to bring the pain down a notch.” I am only dependent on oxycodone to relieve some of the pain. I am always searching for any alternatives. I do not intend to become an addict. I take time off to reduce tolerance. I do not know what else I can do for the pain – the medication keeps me functional sometimes. I don’t know how people can abuse painkillers to “get high.” I get violently ill and vomit when I take too many in a day, let alone double the dose when the pain is really bad. Please don’t punish responsible pain patients because of abusers and addicts, and let’s get the addicts the help they need. Thank You!

  • RobertCan
    4 years ago

    In my case, opioids are deployed as rescue meds. I can no longer afford a trip to the local emergency room. My health insurer has deemed migraine care in ER “not covered” after two visits. I’m also fighting cancer. I would give up opioids in a nanosecond in exchange for a life without pain. Abusers need to be dealt with, but not at the expense of the rest of us!

  • Katie M. Golden moderator author
    4 years ago

    Robertcan,
    I think these Guidelines do NOT address cancer patients, so you may be fine to get your painkillers without a hassle. I am so sorry that you have both Migraines and cancer.

    Best Wishes,
    -Katie

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