The great folks at RheumatoidArthritis.net have published their annual survey on RA. More than 3,000 people responded, describing what life is like with RA in 2017. You can find this enlightening information here: https://rheumatoidarthritis.net/infographic/ra-not-just-joints-or-bones-but-so-much-more/
Last Friday, 10/20, Janssen Biotech announced that its RA drug, Simponi Aria, received FDA approval for treating adults with active psoriatic arthritis (PsA) or active ankylosing spondylitis (AS). First of all, I’m on Simponi Aria and I’m doing as well or better than I have since my diagnosis. If PsA and AS patients can get the kind of results I have, it will make a world of difference in their lives.
But beyond that — why does this announcement matter to RA patients?
I think there are a couple of things that make this important.
First of all — a common treatment underscores the connection between these inflammatory diseases. This means that research into what causes one of them very well could lead to discoveries for the others.
Second — this demonstrates the potential for other drugs to be used for multiple conditions. As medications are developed for one inflammatory condition, this kind of news supports seeking approval for treatment of other diseases. This makes drugs for patients (including RA patients) available much more quickly than researching, developing, and approving a completely new treatment.
So congratulations to Janssen on these approvals. And congratulations to the people with PsA and AS, and the rest of us with inflammatory conditions that proven drugs are now available to a broader range of patients.
I hope whatever approvals are pending in your life are also successful. Thanks for checking in.
I’ve been seething since I read Prime Therapeutics’ October 17 news release asserting that patients are being prescribed biologics outside of American College of Rheumatology (ACR) guidelines. The referenced Prime Therapeutic reports assert that patients are being switched from conventional DMARDs to more-expensive biologic treatments before the DMARD therapy is given a proper chance to work (as much as 24 weeks – or almost six months). The report concludes this has caused an unwarranted higher total cost of care for RA patients. The conventional first-line DMARD is methotrexate (MTX) and the triple therapy of MTX/hydroxycholoquine/sulfasalazine was also discussed.
For those of you who are not familiar with Prime Therapeutics, they manage pharmacy benefits for health plans, employers, and government programs including Medicare and Medicaid. Their opinions affect more than 20 million people. For many, this is the entity that determines whether or not their prescribed medication treatments are approved and whether there are pre-approvals or step-therapies involved.
I get it. Someone needs to keep an eye on keeping prescription costs in line. But focusing solely on the cost/benefit ratio excludes the patient’s best interests from the equation. Even the National Institute of Health (NIH) has stated, “The treatment of RA has been transformed in the last decade with the introduction of several targeted biologic agents. Although biologic agents are more costly in the short term than conventional disease-modifying antirheumatic drugs, drug-specific costs may be offset by significant improvements in RA symptoms, slowed disease progression, and improved physical function and quality of life for patients.”
I could spend pages taking Prime’s conclusions to task, but I will limit my comments to four major points:
- While the report tracked when patients were switched to a biologic, the reasons why the patients were switched were not included. By excluding this data, the report appears to imply that switching from conventional DMARD therapy was done without medical merit. This is not necessarily true. For example, there are patients who have concerning side effects from MTX including liver toxicity. There are other valid medical reasons for switching from MTX including other drug interactions and patient compliance issues.
- Physicians are the best judge of which drugs will be the most effective for their patients. They see the living results of treatment plans every day in their practice and they have front-line knowledge of which medications are the best choices for their patients based on a number of variable factors. As an example, not all patients are diagnosed in the early/mild stages of the disease. In fact, many are misdiagnosed for an extended time and, by the time the rheumatologist sees them, may have developed an aggressive/severe disease state. It should be the physician’s call as to whether conventional DMARD therapy is the best choice or whether more powerful biologics are needed. A simile to Prime Therapeutics report would be if your house was on fire and when you called 9-1-1 they said you must try a fire extinguisher first because it cost the city a lot of money to send out a fire brigade.
- Patients are financially involved in these decisions. Yes, RA drugs are some of the most expensive drugs there are, but companies such as Prime seem to forget that patients share in paying for these drugs. Either the drugs aren’t covered at all, have only a percentage of the cost covered or the patient’s coverage has high deductibles and/or copay amounts. Patients have as much or more motivation to control health care costs as companies such as Prime. I recently met an RA patient who had to make the choice of paying for her RA treatment or pay for college to finish her degree. These kinds of personal sacrifices are not unusual and underscore the importance that patients put on finding an effective treatment.
- Some of the information in the Prime Therapeutics’ news release is suspect. For example, there is a quote in the Prime Therapeutics’ news release that starts, “RA guidelines supporting use of conventional DMARDs before biologics have been in place for more than two decades …” This is an interesting statement given that the first biologic, Enbrel, wasn’t introduced until 1998, less than two decades ago. In addition, both the NIH and the ACR both reference the ACR’s 2008 recommendations for the use of nonbiologic and biologic DMARDs in RA (published less than one decade ago). These recommendations clearly state that the ACR, “… has not previously developed recommendations for recommendations for biologic agents.” The ACR updated these recommendations in 2012, which was five years ago (not two decades). The latest ACR guidelines are from 2015 and cover the overall treatment of RA, including the use of biologic and nonbiologic DMARDs. I’m not sure where the Prime Therapeutics got their two decades of recommendations. True, they may be referencing some other, less-prominent guidelines but in the US the ACR is the defining authority. And if they did actually get this statement incorrect, it makes you wonder what else is incorrect in their information.
I actually read the ACR’s 2015 Guideline for the Treatment of RA and, as much as I searched, I couldn’t find any reference to how long a patient should be on “conventional DMARD” treatment before being transitioned to a biologic. In fact, contrary to Prime Therapeutics assertion that switching between conventional DMARDs and biologics is contrary to the ACR guidelines, the ACR recommendations clearly state the following:
This RA guideline should serve as a tool for clinicians and patients (our two target audiences) for pharmacologic treatment decisions in commonly encountered clinical situations. These recommendations are not prescriptive, and the treatment decisions should be made by physicians and patients through a shared decision-making process taking into account patients’ values, preferences, and comorbidities. These recommendations should not be used to limit or deny access to therapies.
I am in favor of controlling prescription costs. I also strongly believe that controlling costs should not interfere with practicing medicine or with prescribing appropriate treatment plans for a patient. Unfortunately, the influence that Prime Therapeutics wields has the ability to do just that.
Thanks for checking in.
Even though I publish things on the Internet, it’s a bit weird to find out that people actually read them. Whenever I meet someone in person who reads my blog I immediately get self-conscious trying to remember what frustrations I’ve vented and whining I’ve done, suspecting this person probably thinks I’m probably a few sandwiches short of a picnic.
I just came back from an amazing trip where I ran across two people who read my blog. One was in the same meeting I was in and the other, who I will call “Barb”, turns out to be a friend of a friend (sort of).
At several points during the meetings I attended I was reminded of the importance of the RA community. While there is a lot of officially sanctioned/sanitized information about the disease available, community is where we learn about the true patient experience. Community, whether person-to-person or online, is where we connect with one another, get advice, give comfort and share what it’s really like to deal with this disease. Without community, we’re alone. With community, we have an army at our back.
And it’s my readers who continue to encourage and inspire me to keep writing after more than nine years. So to Barb, and the rest of you who have walked my journey with me, thank you.
I love it when I find a new, reliable resource in the fight against RA and other inflammatory diseases. I should have already known about the International Foundation for Autoimmune & Autoinflammatory Arthritis (IFAA) because I’ve met some of their members with whom I’ve been quite impressed.
I ran across the IFAA in conjunction with an RA study group which published a couple of items from the IFAA.
- The first is a document with tips on verifying information and help stop it from spreading. It’s called, “I heard unicorns cause RA” and can be found here: http://nebula.wsimg.com/64719d5d4b57fd0fe13b48e2666e5560?AccessKeyId=9BD8916C246CAC51B04E&disposition=0&alloworigin=1
- The second is a program that allows us to report false information or misunderstandings in publications. This is a program run by volunteers that follow up on the materials to help get them corrected or retracted. It can be found here: http://www.ifautoimmunearthritis.org/media-awareness-hotline.html
Here’s hoping that you have the resources you need in your personal battle against this disease. Thanks for checking in.
The good news is my doctor got my test report and I don’t have achalasia. The bad news is that I don’t have achalasia. I say that because at least achalasia has a defined surgical treatment.
My situation is apparently something called hyper contractile esophagus, meaning that instead of a nice smooth swallow, I generate super high pressures in my esophagus and the food gets jammed up. Unfortunately there is no real defined treatment for this.
My gastroenterologist has suggested that I try muscle relaxers.
Let me see, mind-numbing fatigue caused by RA combined with a number of existing prescription drugs that also slow me down — and he wants to add muscle relaxers?
I told him he could prescribe them but I’d only take them when I didn’t want to get out of bed that day.
I take about a dozen prescription drugs plus a handful of supplements. Adding yet another prescription drug (probably multiple times a day) that may or may not solve the problem is just not something that I’m willing to do. I’ve learned (out of necessity) how to eat to minimize the problem and, given the choice, I’d rather be awake, thank you very much.
It’s understandable that when we take problems to our doctors that they want to solve them for us. However, I’ve always told my doctors that it’s okay if one of the options we discuss is “do nothing.” In this situation, I think “do nothing” is the right thing to do.
So thank you, everyone, for your well wishes. I really, truly appreciate all the support. I hope whatever doctor reports are in your future are also benign. Thanks for checking in.
There are sometimes days or even weeks that go by that I don’t interface with a health practitioner. But, I tell you what, the last week or so has been challenging. Here are some updates:
- I went in for the manometry testing for Achalasia (which, if anyone asks, was not pleasant). The testing doctor’s office worked with gastroenterologist to get me a quick appointment and promised the results would be back this week. My gastroenterologist worked me in for an appointment to discuss the results and, guess what? The results aren’t available. The testing doctor was out of town. His medical assistant was at a conference and his nurse had called in sick. So my gastroenterologist was not able to reach ANYONE at the other doctor’s office and was therefore unable to give me any information about the situation and probably won’t for another week or two.
- The manometry was on a Friday. After the weekend, I was scheduled for some nuclear medicine testing to determine if my knee replacement was infected or had come loose. This is similar to an MRI. It’s not bad, but it’s tedious and spread out over a couple of days because the radioactive material they inject has to circulate through your body. Turns out the knee is great. However, my spine showed compression fractures and degenerative changes (which I now have to see my neurosurgeon about) and my right shoulder showed a marked increase in arthritic changes since I had it checked last (so I have to see that doctor’s office as well). My knee ortho doc, who is a super guy, had me come to the office even though the knee looked fine. He wanted to do an exam to see if he could figure out what was wrong. At the end of the exam, we agreed on a steroid injection to see if that would help (which so far it has). I am hopeful that all this turns out to be nothing more than a strained ligament or tendon.
- The day after the nuclear imaging, I was scheduled for my biologic infusion. I am a hard stick anyway, but this was beyond ridiculous. Over a three-hour period two different people tried (and failed) to start the IV. (The entire infusion is only 30 minutes long.) They stuck me eight times without success. A couple of times they actually hit the vein but then blew it out. This was on a Thursday. They had me come back the following Monday and stuck me three more times without success. I am on Simponi Aria which is the IV formulation of Simponi which is the injectable version. The great people at Janssen (who manufacture the drug) were able to point me to some publicly available studies on the two versions of the drug and, after discussion with my doctor, I am temporarily doing the Simponi injections to get me through my upcoming vacation. I am scheduled to try the infusion again when I get back from vacation. If they have problems with the IV again, I’m not sure what I’m going to do. Medicare pays for infused medication, but injections come under the drug plan which may not be covered.
So that’s been my adventures in Medical Land lately. The good news is I am going to be off the grid for a while doing fun stuff.
I hope whatever adventures you have are wonderful. Thanks for checking in.
Methotrexate has been a core drug in the fight against RA. However, patients are generally warned about drinking any alcohol while on it. A new study, however, suggests that it may be possible to enjoy that glass of wine or cocktail.
Read my full article here at rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/mtx-and-booze-back-together-again/
It’s understood that disease is a symptom — it’s a signal that something’s wrong. However, there is a significant number of people that suffer from chronic pain and, partly because of this, the discussion is now turning to whether pain, itself, should be classified as a disease. As with a lot of things, there is good news and (maybe) not-so-good news in this. Read more in my article at rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/is-pain-a-disease/
The Global Healthy Living Foundation (www.ghlf.org) has sent a list of links below that can provide assistance to those needing medical assistance in the wake of Hurricane Harvey. In addition, this link (Take Action Now) will provide you with the phone numbers and talking points for the governors of Texas and Louisiana to ask them to request the U.S. Department of Health and Human Services (HHS) activate its Emergency Prescription Assistance Program (EPAP). This program will ensure that eligible patients can receive their desperately needed prescriptions at no cost from participating pharmacies.
As a resident of Dallas, we were largely unaffected by the Hurricane, but we are now receiving thousands of evacuees as people are able to leave Houston for safer ground. These people need all the help we can give them.
Thanks for anything you can do.
Helpful links to share:
- Infusion Center Locator (https://locator.infusioncenter.org/) – Allows the display of infusion facilities as temporarily closed (live and up-to-date)
- Healthcare Ready’s RxOPEN page (https://www.healthcareready.org/rxopen) – Resource that displays operational capacity of retail pharmacies within impacted communities
- This group (https://www.facebook.com/groups/HurricaneHarveymedicalsupplies/) was created by health advocates active in their health communities. They are taking donations & mobilizing volunteers to fill untapped needs for patients with chronic conditions
- Disaster Relief Resource Pages: (https://www.healthcareready.org/resources) & (https://infusioncenter.org/disaster-relief/)
- FDA resource pages on safe drug use after a natural disaster:(https://www.fda.gov/Drugs/EmergencyPreparedness/ucm085200.htm )
- Please also see this resource that may help with future planning:https://creakyjoints.org/living-with-arthritis/emergency-preparedness-tips-for-the-arthritis-community/