PAN / Vasculitis Chat---The ACR Simple Tasks Campaign

DATE: May 20, 2012

Participants:

Ed: PRSN Moderator

Erin Latimer:: American College of Rheumatology—Director of Public Relations

Stephanie: PAN Group Member

Pan Caregiver: PAN Group Member

Dr. Eric Hoy: Immunologist


Web Resources: The American College of Rheumatology: http://www.rheumatology.org/

The ACR Simple Tasks Campaign: http://www.rheumatology.org/simpletaskscampaign/landing_stc_logon.asp


Ed: Good evening everyone and welcome to our web chat. Tonight we have a special guest, , who is going to talk to us about rheumatology, rheumatologists, and the American College of Rheumatologists (ACR). We are also joined by Dr. Eric Hoy, immunologist. And Kathy from the PAN Network has joined us. Let's get it started. Erin— an introduction please.

Erin Latimer:: Sure! Born, raised, and still live in Atlanta. Aunt, mom to a small, wonderful dog. I am the director of public relations for the ACR.

Ed: Let's even step back further. What is the ACR? What is your mission?

Erin Latimer:: The ACR is a professional association of over 9k rheumatologists and rheumatology health professionals. Our mission is advancing rheumatology. We offer education, we visit Capitol Hill, and we work on behalf of our members and their patients.

Ed: And as PAN Patients know all too well, rheumatologists are the specialists trained to deal with autoimmune diseases including vasculitis. But Erin… rheumatologists also do deal with quite a range of diseases, right?

Erin Latimer:: Correct. Just as you'd see an oncologist for the treatment of cancer, the rheumatologist is the specialist for the treatment of rheumatic diseases. Rheumatologists treat the 100 diseases and conditions that fall under the umbrella term 'arthritis.'

Ed: Our patients are mainly concerned with vasculitis, but there's actually a wide array of autoimmune diseases.

Erin Latimer:: Correct...over 100 types of autoimmune diseases.

Ed: So let's talk about this specific initiative called Simple Tasks. What is it?

Erin Latimer:: This is the ACR's first public relations campaign. It is based on the concept that rheumatic diseases are more than aches and pains more than just a part of getting older. They are crippling, painful and costly. And, for those living with them, even Simple Tasks can become impossible.

Ed: And to clarify...can vasculitis be put under this umbrella as a rheumatic disease? In other words, vasculitis diseases are similar to or same as autoimmune? Is that accurate?

Erin Latimer:: Yes. Vasculitis is considered an inflammatory rheumatic disease (which is what Simple Tasks focuses on)

Ed: I just wanted to establish that because newer dx'ed patients with PAN may not realize they fall under a much wider category.

Dr. Eric Hoy: Autoimmune and rheumatic have a lot of overlap. I think that's what you were asking.

Erin Latimer:: Yes, there are 7 million Americans living with inflammatory rheumatic diseases (e.g., vasculitis, rheumatoid arthritis, lupus, gout).#

Ed: I just wanted to establish relevance especially for PAN or vasculitis patients who read this..

Dr. Eric Hoy: There are some fine distinctions, but the two terms can be used interchangeably.

Ed: Erin, what are some of the challenges out there with needing to inform more people about rheumatic diseases?

Erin Latimer::. We want to help referring physicians with referrals. We talk a lot about early and appropriate referrals of rheumatic diseases. This is very important for patients.

Ed: What is the weight of responsibility, or the critical need for general physicians to know about these diseases? And critical factors for the patients?

Erin Latimer:: We are working to provide referring physicians with the tools they need to notice the warning signs to get patients to a rheumatologist early. This is called the window of opportunity.

********** Dr. Karen joined the room
********** Stephanie joined the room

Ed: Hello and welcome to Dr. Karen Himmel!!

Erin Latimer:: That concept is: The earlier a patient is seen and treated by a rheumatologist, the better the outcome.#

Ed: Erin is talking about a program called Simple Tasks. And as she was just saying the key mission is to raise awareness of rheumatic diseases to medical community as well as legislators.

Ed: So Erin and I are going to continue doing our Q and A. Please hold your questions until we're done and then we'll open the floor. Just to recap what you were saying Erin-- please say again why it's so critical that rheumatic diseases have a window of opportunity. Why is early dx is so important?

Erin Latimer:: The first weeks and months following symptom onset = window of opportunity. It is crucial that patients get appropriate treatment in that time period to avoid long-term complications. This is why we are looking to referring physicians for early and appropriate referrals.

Ed: Erin, what are some of the ways that you are directly educating the general medical community?

Erin Latimer:: We are visiting medical association meetings, doing personal outreach to these associations, and providing educational resources at SimpleTasks.org that will help referring physicians. This is just our starting point.

Ed: How are you doing outreach, and also what is your message to them? How do you put such elusive symptoms on their radar so their red flag will go up?

Erin Latimer:: There are so many signs and symptoms to look for we are trying to help physicians identify some of them. Our message is: If you suspect an inflammatory rheumatic disease, it might be time to reach out to a rheumatologist. I would love to know some of the red flags Dr. Karen looks for before referring.

Ed: Dr. Karen can talk about this shortly, but as an internist what are specific symptoms or clusters of symptoms that should make them think....rheumatic, or autoimmune. Or to put it this way...what are common misdiagnosis of autoimmune diseases?

Erin Latimer:: We've started with 10, which we are currently sharing with physicians. Things like: Presence of selling in the joints, especially multiple joints. Weakness, such as new onset difficulty rising from a chair, along with elevated ESR and creatine kinase levels. New blue or white color changes in fingers and toes...especially with ulcers. To name a few. Ed What about catching students in med school? Can you focus on that demographic?

Erin Latimer:: The ACR does reach out to med students with our Choose Rheumatology campaign. This is to give them an intro to rheumatology and to help them make the decision to specialize in rheumatology (we need more rheumys). That's where Simple Tasks supports this effort.

Dr. Karen: Medical students are taught autoimmune diseases but they are learning so much that it is hard to keep very rare diseases straight.#

Ed: And is this accurate--that it's equally important to educate the public because maybe a patient can have autoimmune suspicion and communicate that to his or her doctor, or seek out a specialist?#

Dr. Karen: Residency is where the doctors can get more information about autoimmune disease but that is for internists and family medicine and pediatric specialists. There is a shortage of rheum so it is hard to get an appointment for referring patients.

Ed: And Erin, Simple Tasks is also directed at legislators to help them become aware of the need.

Erin Latimer:: Correct - we want to spend more time with lawmakers discussing the issues and less time having to explain how severe the diseases are and how important rheumatologists are in the health care system.#

Ed: So a major issue is simply that we need more doctors going into rheumatology.

Erin Latimer:: We do. This is something the ACR is approaching from a number of directions.

Dr. Karen: One problem is the insurance companies. They won't pay for meds without a diagnosis and sometimes it takes a while before a disease will fully present itself.

Ed: Well, I'll turn over to questions. I just want to tell everyone to check out the website...Erin, please tell us where to find it and what you would like us to do when we go there and what you would like us to do when we're there.

Erin Latimer:: Thanks Ed! Please visit www.SimpleTasks.org and click on Take Action. We also have a great video and would welcome you sharing it with family and friends.

Ed: Perfect! Well, I'll step back and if you have a question for Erin or Dr. Karen.

Kathy (guest):I used to think that rheumatologists took care of elderly people with achy joints. Perhaps, they need a new name like auto-immunologists? Maybe there would be a better understanding of the diversity of diseases that they deal with. What do you think?

Erin Latimer:: I don't think you are alone in your confusion, Kathy. Our hope is we can do some education to get people to understand what rheumy do and to get rid of the impression that these are 'older people's' diseases.

Dr. Karen: In medicine all autoimmune diseases are in the class of rheumatology. Doctors know the difference. The problem is that most of what rheum do is old people with achy joints. Unless they are in a referral center.

Ed: Dr. Karen, as an internist what symptoms would have caused you to refer a patient to a rheumatologist?

Dr. Karen: Usually it is not just one symptom. As an internist we are diagnosticians. Fatigue is very common complaint but with inflammation the fatigue is different. Swollen joints, muscle weakness,

Dr. Eric Hoy: Rheumatologists deal with a lot more than just old people with achy joints, unless that's what the rheumy thinks his practice is.

Dr. Karen: The common diseases like RA is picked up easier than vasculitis from blood work you look for elevated ESR or CRP, autoimmune antibodies. We are taught that when you hear hoof beats this of a horse and not a zebra. Vasculitis is a zebra.

Dr. Karen: I find that women are not taken as serious and are told to see psychologist.

Ed: Erin...isn't it true that rheumatologist themselves need education in the subset of diseases like vasculitis

Erin Latimer:: I think rheumatologists work to stay on top of the 100 different diseases and conditions they are charged with treating. Some might focus more on OA, while others focus more on RA, Lupus and Gout. We have a great meeting each year that welcomes over 16k people to provide education on all of these diseases and conditions.

Dr. Eric Hoy: I find that a lot, too, Karen. Even relatively common diseases like lupus get dismissed because the GP doesn't recognize it.

Dr. Karen: Yes, because of the rarity to get good you need to see a lot of cases, so the docs in referral centers have more experience.

Ed: Dr. Karen. We'll have you as a guest in a new chat, but tell us a little bit of your story. The Reader's Digest version. You are an internist who suddenly became a patient with an autoimmune disease?

Dr. Karen: I came down with an autoimmune disease that still does not have a name yet. I was referred to a major referral center and was told to see psych because I had a diagnosis of fibromyalgia

Ed: Karen...so did you begin to grow suspicious of symptoms in yourself and how did that unfold?

Dr. Karen: I knew something was not right, fatigue was one of my most significant symptoms. When I was put on prednisone for sinusitis my other symptoms blossomed when I stopped the pred. I had abdominal pain, headache and my energy tolerance was about 1/4 of before I became ill. I had blood in my urine seen under the microscope, elevated liver function test. The last two were found at the referral center that did not think I would have any abnormal tests.

Ed: I remember you saying it was hard to be taken seriously by some docs. You got the classic, "it's in your head" line.

Dr. Karen: I had an elevated CRP and finally saw a rheumatologist in Jan of 03. I had fibromyalgia for 9 years before this and had been working out in the gym an hour each morning 5 days a week. I was diagnosed with PAN which is how I found this group and started on high dose prednisone. It took about a month for my headache to get better, it lasted until 08.

Ed: So are you still undiagnosed at this time?

Dr. Karen: I had tests but PAN was not confirmed and I was undiagnosed. I had someone dx me with Hashimoto's Encephalitis but other docs did not feel that was the case. I am still undiagnosed, I have NOS connective tissue disorder. NOS means Not Otherwise Specified autoimmune disease

Dr. Eric Hoy: Do you have thyroiditis?

Dr. Karen: Yes I have Hasimoto's Thyroiditis since the age 17.

Ed: Erin, what has been the feedback and response from med community to your program?#

Erin Latimer:: Thus far, it has been good. We are still learning a lot about the needs of referring physicians (when it comes to referral of rheumatic diseases) and we are putting together more tools that will help them.

Dr. Karen: I have found that as doctors we try to fit symptoms into a disease or name like Lupus, PAN, etc.

Dr. Eric Hoy: Are you gluten or soy sensitive?#

Dr. Karen: I have tried a gluten free diet for over 9 months without any change in my symptoms and my antibodies have been negative for gluten. I have not looked into soy sensitivity.

Ed: Erin, I will list your website and really encourage my membership to visit ACR site and simple tasks to learn more and the point is...everyone can do something, right?

Dr. Karen: I think Simple Tasks is great but how did it get its name?

Ed: Good question. Actually you have to check out the site. I love the way they used common utensils that are twisted to represent rheumatic diseases. Using a bent fork, or other utensils in a twisted fashion to show the effect of rheumatic diseases. Brilliant.

Erin Latimer:: Karen, we created and tested a number of concepts. This one was the clear winner with all of our audiences. They 'got it'!

Erin Latimer:: Thanks Ed! You are correct! I think we are going to make some great strides with this campaign. Thanks Ed! The fork really makes sense to people.

Ed: A great chat tonight everyone. We really appreciate having you here to join us and enlighten everyone to join the ACR's Simple Tasks campaign. Be sure to watch our website for future chats.


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