Behcets made the New York Times - and possibly NBC Nightly News!
As you all probably already know, World Oceans Arts does pretty much everything it can in the world of art. From on screen, to on a stage, WOA thrives doing as many projects it can get its hands on. This is great because 1) It gives actors working with World Oceans opportunities to try new things, and 2) It bring new actors/performers into the WOA family.
A couple years ago, World Oceans asked some of its performers, including myself, if there was any cause they would like to help create a PSA for. I immediately told them I would love to create a PSA about Behcets, an autoimmune disease of the blood vessels that I am afflicted with. They loved the idea, and we have been in pre-production of this PSA ever since. James and I actually met for coffee two weeks ago to really get the ball rolling: contact other Behcets patients/the ABDA, figure out what we wanted it to look like, etc.
Coincidently, I had also been talking to the New York Times the past month or so about a small part of my Behcets journey. I have chronic pain due to nerve/blood vessel damage in the abdomen from a previous Behcets flare, for which I take pain meds daily. Earlier this year, my insurance decided that they, as a whole, would stop covering my long-acting pain medication patch, Butrans, and did not warn me of their decision. It put my life into a tailspin. I tried to fight their decision, but they stood by it, and I ended up paying for a couple boxes of meds out of my own pocket before my doctor and I decided it was time to give up and find another medication. After three months of trying similar medications, that ended up not helping my pain, we ended up settling on Morphine extended-release (the smallest dose). I was flabbergasted it had come to that, but was extremely grateful my doctor was willing to put me on it. I am only 28 years old, and every doctor in the past has been very against putting me on any opioid except for the schedule 3 ones. The New York Times wanted to talk to me about this because many chronic pain patients are being told more expensive, yet safer medications are no longer being covered and that they need to be on cheaper, yet riskier opioids. I have heard so many stories from others in my situation. Patients have ended up on possibly addictive medication, that doesn't actually help their pain as much as the medication they were on previously.
After the New York Times article came out, I was contacted by NBC. I have given them an on-camera interview about my situation, and as I am writing this blog, it hasn't aired. One of the things I wanted to make clear, is that I support chronic pain patients being on opioids if it is needed. Yes, opioids carry risks, but long term pain that is not being controlled brings its own set of risks. Part of the NYT article that I did not like 100% is how they talked about my being worried about addiction. Sure, I am being extra careful on these meds. My husband, who has been my caregiver for years, knows how often I take my as-needed pain meds. If he is home, I say something about needing a pill before I take it. I also keep a pain pill diary to ensure I am 1)not taking too many and 2)ensuring I am not being prescribed too many. I also ask my doctor if there is any meds we can take off my list almost every appointment. But the bottom line is this: I need these meds. If you had seen me during the transition period where my pain meds were not helping, you would understand. I wasn't living, I was just surviving. I deserve the pain relief if it exists, correct? And so do many other chronic pain patients that end up trying every treatment out there, and end up on extended-release pain meds. The opioid crisis has caused a stigma on opioid medications, as if there is no good reason to be given them. It is unfortunately more complicated than that. Chronic pain patients do have a good use for these medications in certain circumstances, including mine. I have seen new regulations cause chronic pain patients to lose their pain meds, and they end up bedridden due to the pain. Chronic pain patients do not get "high" off of their medications, and the statistics of the amount of chronic pain patients getting addicted is actually lower than you think. Of course we need to be careful with these medications, but we do not need put patients in situations where they are going to suffer needlessly either. I could talk about this for days if you can't tell!
Whats funny, is the things I have been talking about with the press is just a small portion of my Behcets journey. It doesn't include the other pains I have in my hip and neck, which I'm actually getting an injection treatment for tomorrow (cross your fingers that goes well!). It doesn't include how it took 8 years to get a diagnosis, and how that diagnosis happened overseas in Germany after many doctors in the US told me I was healthy. It doesn't include the Rheumatologist, OBGYN, and Fertility specialist appointments for the other symptoms. It doesn't include the OTHER fight I have had with my insurance provider about coverage of Humira, a medication known to help Behcets patients with GI involvement like me, yet there is no FDA approval because rare disease's don't get FDA approval. It doesn't include the days where I literally cannot get out of bed due to the insane fatigue and all over pain. It doesn't include how I feel about fighting all this for over 13 years now, wondering when remission will come and give me a break.
I am so happy to be working with World Oceans Arts to produce a PSA that really shows every aspect of being a Behcets Disease Warrior. And I cannot wait for you all to see it. Most doctors and nurses don't know what Behcets Disease is, let alone the general public! That needs to change!
I am certainly excited about the awareness brought on by the New York Times and NBC, and I cannot wait to see where this journey takes me and awareness as a whole. It is becoming more and more clear to me that I can use my chronic illness journey as a way to bring awareness to others, and I am so humbled that the universe chose me to do it. I hope I do all my fellow spoonies proud.
-Alisa Erkes, Webmaster of WorldOceansArts.org
New York Times, "Amid Opioid Crisis, Insurers Restrict Pricey, Less Addictive Painkillers": https://www.nytimes.com/2017/09/17/health/opioid-painkillers-insurance-companies.html
New York Times, "Why Are Drug Prices So High? We're Curious Too": https://www.nytimes.com/2017/09/17/insider/insider-high-drug-prices-opioids.html
ProPublica, "Amid Opioid Crisis, Insurers Restrict Pricey, Less Addictive Painkillers":https://www.propublica.org/article/insurers-limit-coverage-of-pricey-less-addictive-painkillers
Learn more about Behcets Disease: http://www.behcets.com/
A couple years ago, World Oceans asked some of its performers, including myself, if there was any cause they would like to help create a PSA for. I immediately told them I would love to create a PSA about Behcets, an autoimmune disease of the blood vessels that I am afflicted with. They loved the idea, and we have been in pre-production of this PSA ever since. James and I actually met for coffee two weeks ago to really get the ball rolling: contact other Behcets patients/the ABDA, figure out what we wanted it to look like, etc.
Coincidently, I had also been talking to the New York Times the past month or so about a small part of my Behcets journey. I have chronic pain due to nerve/blood vessel damage in the abdomen from a previous Behcets flare, for which I take pain meds daily. Earlier this year, my insurance decided that they, as a whole, would stop covering my long-acting pain medication patch, Butrans, and did not warn me of their decision. It put my life into a tailspin. I tried to fight their decision, but they stood by it, and I ended up paying for a couple boxes of meds out of my own pocket before my doctor and I decided it was time to give up and find another medication. After three months of trying similar medications, that ended up not helping my pain, we ended up settling on Morphine extended-release (the smallest dose). I was flabbergasted it had come to that, but was extremely grateful my doctor was willing to put me on it. I am only 28 years old, and every doctor in the past has been very against putting me on any opioid except for the schedule 3 ones. The New York Times wanted to talk to me about this because many chronic pain patients are being told more expensive, yet safer medications are no longer being covered and that they need to be on cheaper, yet riskier opioids. I have heard so many stories from others in my situation. Patients have ended up on possibly addictive medication, that doesn't actually help their pain as much as the medication they were on previously.
After the New York Times article came out, I was contacted by NBC. I have given them an on-camera interview about my situation, and as I am writing this blog, it hasn't aired. One of the things I wanted to make clear, is that I support chronic pain patients being on opioids if it is needed. Yes, opioids carry risks, but long term pain that is not being controlled brings its own set of risks. Part of the NYT article that I did not like 100% is how they talked about my being worried about addiction. Sure, I am being extra careful on these meds. My husband, who has been my caregiver for years, knows how often I take my as-needed pain meds. If he is home, I say something about needing a pill before I take it. I also keep a pain pill diary to ensure I am 1)not taking too many and 2)ensuring I am not being prescribed too many. I also ask my doctor if there is any meds we can take off my list almost every appointment. But the bottom line is this: I need these meds. If you had seen me during the transition period where my pain meds were not helping, you would understand. I wasn't living, I was just surviving. I deserve the pain relief if it exists, correct? And so do many other chronic pain patients that end up trying every treatment out there, and end up on extended-release pain meds. The opioid crisis has caused a stigma on opioid medications, as if there is no good reason to be given them. It is unfortunately more complicated than that. Chronic pain patients do have a good use for these medications in certain circumstances, including mine. I have seen new regulations cause chronic pain patients to lose their pain meds, and they end up bedridden due to the pain. Chronic pain patients do not get "high" off of their medications, and the statistics of the amount of chronic pain patients getting addicted is actually lower than you think. Of course we need to be careful with these medications, but we do not need put patients in situations where they are going to suffer needlessly either. I could talk about this for days if you can't tell!
Whats funny, is the things I have been talking about with the press is just a small portion of my Behcets journey. It doesn't include the other pains I have in my hip and neck, which I'm actually getting an injection treatment for tomorrow (cross your fingers that goes well!). It doesn't include how it took 8 years to get a diagnosis, and how that diagnosis happened overseas in Germany after many doctors in the US told me I was healthy. It doesn't include the Rheumatologist, OBGYN, and Fertility specialist appointments for the other symptoms. It doesn't include the OTHER fight I have had with my insurance provider about coverage of Humira, a medication known to help Behcets patients with GI involvement like me, yet there is no FDA approval because rare disease's don't get FDA approval. It doesn't include the days where I literally cannot get out of bed due to the insane fatigue and all over pain. It doesn't include how I feel about fighting all this for over 13 years now, wondering when remission will come and give me a break.
I am so happy to be working with World Oceans Arts to produce a PSA that really shows every aspect of being a Behcets Disease Warrior. And I cannot wait for you all to see it. Most doctors and nurses don't know what Behcets Disease is, let alone the general public! That needs to change!
I am certainly excited about the awareness brought on by the New York Times and NBC, and I cannot wait to see where this journey takes me and awareness as a whole. It is becoming more and more clear to me that I can use my chronic illness journey as a way to bring awareness to others, and I am so humbled that the universe chose me to do it. I hope I do all my fellow spoonies proud.
-Alisa Erkes, Webmaster of WorldOceansArts.org
New York Times, "Amid Opioid Crisis, Insurers Restrict Pricey, Less Addictive Painkillers": https://www.nytimes.com/2017/09/17/health/opioid-painkillers-insurance-companies.html
New York Times, "Why Are Drug Prices So High? We're Curious Too": https://www.nytimes.com/2017/09/17/insider/insider-high-drug-prices-opioids.html
ProPublica, "Amid Opioid Crisis, Insurers Restrict Pricey, Less Addictive Painkillers":https://www.propublica.org/article/insurers-limit-coverage-of-pricey-less-addictive-painkillers
Learn more about Behcets Disease: http://www.behcets.com/
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