Tuesday, October 11, 2011

A Parallel Autoimmune Online Community

Back in early September (September 12-19, 2011), it was national "Invisible Illness Week". The theme for 2011 was "Deep Breath, Start Fresh" and the basic idea behind the theme was that sometimes, it's very easy to get caught up in the day-to-day roller coaster of emotions, doctor's appointments and the like, so the organizers hoped to use the week to help remind everyone with a chronic, invisible illness to take care of themselves, and possibly share some healthy ways of actually doing that … but also to try and add some more joy (and even sunshine, hence the logo) into life! Truth be told, I joined Invisible Illness Week late anyway, so I did not really do anything with it at the time, but my feeling is that limiting ourselves to just a week to acknowledge invisible illnesses does a bit of a disservice to the concept, so I theorized "why not address invisible illnesses some other time?!" (I have the same feeling about No D-Day, which I hope to cover at another time). With that, I decided I would do it when time enabled me to do it, not according to someone else's calendar.

So I did not officially "participate" this year as some of my fellow diabetes blogging counterparts did, but shortly before Invisible Illness Week, I did something else. I began following a few individuals with various OTHER autoimmune diseases besides type 1 diabetes. This has been an area of interest for me for a while, and that was how I decided to acknowledge Invisible Illness Week in 2011.

New research suggests that there may be a kind of 'master key' that may help unlock new treatments for many different autoimmune disorders (see HERE for details). Plus, most (except, perhaps psoriasis) autoimmune diseases are actually invisible illnesses, not unlike type 1 diabetes. Hence, my reason for "reaching across the autoimmunity aisle" was because sometimes those of us in the diabetes community tend to view our diseases with a bit of tunnel-vision, almost oblivious to the fact that there are some 80 other autoimmune diseases out there, and I think it's safe to say having those diseases, sucks too! However, I discovered that many of them have a lot of the same issues, complaints and concerns!

A Parallel Universe or Another Earth?

Some of this kind of reminds me of the film that won the Alfred P. Sloan Feature Film Prize (see HERE) at this year's [2011] Sundance Film Festival, specifically a film entitled "Another Earth". Another Earth was a science fantasy/drama film directed by Mike Cahill (and much of it filmed not too far from where I grew up in Connecticut) and starred William Mapother and up-and-coming star Brit Marling. Long story short: the film was about a bright young woman who is accepted into MIT's astrophysics program and aspires to explore the cosmos. Brit Marling's character goes on to discover a duplicate of the planet Earth. I'm including the trailer at http://youtu.be/N8hEwMMDtFY because it's not often that SciFi films are so interesting IMHO.

In the process of following some of the other bloggers with a host of other autoimmune diseases, I realized that there are actually a surprising number of similarities not just in what causes our diseases, but also in how we deal with the day-to-day of trying to live life with a chronic, presently incurable disease. Some of these discoveries I probably should have realized, but just didn't (to be truthful, I sometimes have difficulty understanding what each autoimmune disease is best known for because there are over 80 of them). But the fact is that symptoms of various autoimmune diseases often cross many medical specialties, and therefore affect all body organs, just as in the case of type 1 diabetes. Patients don't just have to deal with specific types of symptoms, but a host of other long-term health issues that are caused by their autoimmune diseases.

For example, were you aware that people with Sjögren's Syndrome are much more likely to suffer from peripheral neuropathy? Or that people with psoriasis are significantly more likely to suffer from cardiovascular diseases (including strokes)? It's true, although unlike diabetes, I usually don't hear people making rude comments at funerals of people with these other autoimmune diseases for their failure to manage their diseases as so many people who don't have a clue what's involved with managing a chronic condition sometimes feel justified in doing when discussing people who lived with diabetes. For that, we can blame the mass media for turning our disease into a short sound-bite. But as you might imagine, regardless of our diseases, we all bitch about insurance companies!

At the same time, most medical education provides would-be doctors with pretty basic learning about autoimmune diseases, and most physicians (including many specialists) are generally unaware of interrelationships among the different autoimmune diseases or advances in treatments outside their own specialty areas unless they have taken Continuing Medical Education (CME) credits on specific topics related to these other autoimmune diseases. In the case of type 1 diabetes, far too many specialists presume they know more than they actually do. Still, most research being conducted tends to be disease-specific and rather limited in scope. More information-sharing and crossover among research projects on all different autoimmune diseases is clearly needed.

Lurking In Other Autoimmune Disease Communities in the Social Media Space

The result of my blog (and Twitter) "lurking" on some of these autoimmune disease bloggers and communities was the realization that there's actually a number of groups that are a lot like the Diabetes Online community (or "D-OC") for people who suffer from, for example, Rheumatoid Arthritis (a.k.a. "RA", or on Twitter typically designated by the hashtag #rheum).

Beyond having created similar social circles of fellow patients who blog about life with RA, many also carry around similar baggage from know-it-all ignoramuses in society (much like those who assume that life with type 1 diabetes is exactly the same as life with type 2 diabetes) who assume that the autoimmune form of arthritis known as RA is exactly the same as osteoarthritis which is commonly associated with aging (for the record, RA is NOT the same as osteoarthritis, just as type 1 diabetes is, in at least a few notable ways, a rather different disease from type 2 diabetes).

Aside from dealing with public misperceptions of their disease, the RA community also has a similar recurring theme we've seen in the diabetes community, specifically the idea of portraying RA patients as "Superheroes" (which we ARE, after all!!).

In the Diabetes Community, catch Chris Bishop's [from the D-OC] more recent post on that topic HERE, some of his earlier iterations of the Diabetes Superheroes can still be found on the Internet Archive (my personal superhero avatar can be viewed HERE), and of course, there's the Diabetes Duo (Captain Glucose and Meter Boy):

One RA blogger has assumed a role of highlighting the RA superheroes (see HERE), although there are not the cool graphics the D-OC has seen in some iterations, but the point behind the listing is similar. What's more, the unacknowledged baggage many people with these other autoimmune diseases are forced to carry around is, in many cases, surprising similar to life with type 1 diabetes. I also discovered there are even a few Podcasts, BlogTalkRadio programs and many people with these various autoimmune diseases who also participated in Invisible Illness Week.

Imagine that ... a parallel universe of people living with other autoimmune-mediated diseases in the blogosphere, on Twitter, BlogTalkRadio, Google Plus, Facebook, podcasting, etc.!

A Need for United Efforts Across the Autoimmunity Community (gee, that rhymes!)

Although there are some umbrella organizations such as the American Autoimmune Related Diseases Association which is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner. However, IMHO, there's much work remains to be done as far as research coordination (especially with the U.S. National Institutes of Health). One of ARDA's objectives is also too address some common themes impacting ALL autoimmune diseases.

Still other organizations, such as the FAIR Foundation aren't specific to autoimmune diseases, but work for attaining fair and equitable distribution of bio-medical research funds allocated by the U.S. government for ALL diseases, a fair number of which are autoimmune diseases. For example, although the U.S. Federal government will allocate $1 billion to diabetes research in in 2012 according to Government statistics, when one examines how much is being spent for each person with diabetes, it equates to just $42 per patient, compared to an unfathomable $46,890 for each person with West Nile Virus, $4,901 for each person with some form of cancer (including $3,721 for each person with breast cancer specifically compared to $177 for each person with prostate cancer), and $3,047 for each person with HIV/AIDS. Their objective is to change the current budgeting system into one that actually takes into consideration the incidence, mortality, suffering, morbidity, communicability and preventability of each disease, and secondarily, to help eliminate America's organ-donor crisis. (see HERE for references on these stats)

Although a few diabetes non-profit organizations, such as the Juvenile Diabetes Research Foundation (JDRF), have in recent years begun collaborating with research organizations associated with other autoimmune diseases on mutual areas of interest on the autoimmunity front, including the JDRF's partnership with Fast Forward, LLC (which is a wholly-owned subsidiary of the National Multiple Sclerosis Society) in a collaborative partnership with an Italian company known as Axxam SpA to develop new treatments for both autoimmune diseases (multiple sclerosis and type 1 diabetes, see the press release HERE), most of these collaborations are still pretty recent. Because most of these collaborative efforts are still quite new, few have yielded much in the way of progress so far, although these could yield some very important results in the future. Such partnerships are, IMHO, long overdue. Ideally, one might presume that the U.S. National Institutes of Health (NIH) would be coordinating research efforts across diseases with very similar etiologies, but as I hope to demonstrate in the next section, that doesn't seem to be the case.

NIH Autoimmune Disease Coordinating Committee's Absent Participant: NIDDK

To facilitate collaboration among institutes of the NIH, other Federal agencies, and private organizations with an interest in autoimmune diseases, both the U.S. House and Senate Appropriations Committee reports in June 1998 encouraged the establishment of an NIH Autoimmune Disease Coordinating Committee under the direction of the National Institute of Allergy and Infectious Diseases (NIAID).

Ironically, you might be surprised to learn that the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) responsible for diabetes research has committed few dedicated resources to the autoimmune disease coordinating committee except when it's been required to do so by law. There is NOT a dedicated NIDDK representative on this committee. We can probably thank the Special Statutory Funding Program for Type 1 Diabetes Research which dedicates substantial taxpayer dollars to research on the topic of autoimmunity for almost all of the NIDDK's involvement to date.

The Special Statutory Funding Program is a very unique appropriation that the NIDDK administers on behalf of the Secretary of the Department of Health and Human Services, in collaboration with multiple NIH Institutes and Centers and the CDC for research on the prevention and cure of type 1 diabetes in the amount of $1.89 billion for Fiscal Year (FY) 1998 through FY 2013. However, beyond that appropriation, there is now some evidence to suggest that type 2 diabetes may actually have an autoimmune basis (see HERE).

New Data Also Suggests Autoimmunity in Type 2, Albeit With Different Immune Response Targets

The immune response in type 2 diabetes does not specifically target insulin or the islet cells as is the case with type 1 diabetes. In type 1 diabetes, autoreactive T cells targets insulin and other normal, "self" beta cell proteins as if they belonged to dangerous microbes, whereas in type 2 diabetes, the immune response involves two different types of immune system cells, specifically T cells and B cells in addition to macrophages. In other words, individuals with insulin resistance would NOT test positively for ICA's (or islet cell antibodies) — one of several different lab tests that may be done to confirm an appropriate diagnosis of autoimmune-mediated type 1 diabetes, but the research does suggest that people with insulin resistance actually DO make antibodies to a select group of their own proteins which sets off a cascade of metabolic abnormalities.

This logically suggests that type 2 diabetes may also have an autoimmune basis as well (see the April 17, 2011 scientific/medical journal Nature Medicine for more background on that). Hence, although interventions and/or treatments to induce self-tolerance might be different for type 1 and type 2 diabetes, because both diseases have an inherent interest in autoimmunity, it's logical to presume that the NIDDK would have a permanent member with some leadership role on the Autoimmune Diseases Coordinating Committee.

That presumption would be mistaken.

The closest representation we have was revealed in the National Institute of Allergy and Infectious Diseases' (NIAID) Autoimmune Disease Coordinating Committee's 2005 report to Congress (see HERE), yet in the staff bio (see HERE) for Dr. Stephen P. James, MD who is cited as the NIDDK's committee participant, there is no mention of the Autoimmune Disease Coordinating Committee as part of his "Current Portfolio/Responsibilities" or under "Committees/Working Groups" he works in, or in "Other Activities" listed among his duties. This suggests he is NOT a permanent NIDDK participant on this important committee. Yet he was rightly chosen because he has the most experience within the NIDDK in issues pertaining to autoimmunity.

My response was: WTF is going on here?

In other words, the NIDDK does NOT seem to have permanent membership on this seemingly important committee, especially since the NIDDK has interest in autoimmunity for BOTH type 1 AND type 2 diabetes, but NIDDK management has literally had to be forced (by law) into participating.

NIDDK & Autoimmunity Coordination: Only When the Law Requires Our Participation

Federal records indicate that although the NIDDK is obliged to have some representative on the Cooperative Study Group for Autoimmune Disease Prevention (CSGADP) efforts and a handful of other programs and committees, each meeting's attendance from the NIDDK has been a completely different individual. Even more WTF? from my perspective!

In fact, it appears that because the NIDDK is required by the Special Statutory Funding Program for Type 1 Diabetes to have representation on the Cooperative Study Group for CSGADP within the NIH that may very well be the ONLY reason the NIDDK even bothered to send someone to these meetings. The NIH autoimmune disease prevention effort was established in 2001 as a collaborative network of investigators with a focus on prevention of autoimmune disease, defined as halting the development of autoimmune disease prior to clinical onset by means other than global immunosuppression, and a particular emphasis on type 1 diabetes.

Indeed, I think it's safe to say that it’s only because of the Special Statutory Funding Program, which enables the creation of unique and collaborative research consortia and clinical trials networks focused on the prevention, treatment, and cure of type 1 diabetes specifically, that NIDDK even participates.


The bigger question we should be asking is whether the NIDDK the leadership considers autoimmune research something that is even core to the institute's mission?! I blame the current leadership for this lack of involvement. Here again, we see that the person running the NIDDK is a long-term bureaucrat (albeit a person who is a medical doctor), Dr. Griffin P. Rodgers. One might presume that the man running the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to be, oh I don't know, maybe a person who's an endocrinologist, a gastroenterologist or perhaps a nephrologist?


Dr. Rodgers is, by training and Board Certification, a hematologist (in other words, he's a blood doctor). The previous Director of the NIDDK, Dr. Allen M. Spiegel, was logically a Board-certified endocrinologist. While all medical doctors have a basic understanding of the various body functions and disease, is it really that difficult to find someone with training in diabetes, digestion or the kidneys to run the organization known as the National Institute of Diabetes and Digestive and Kidney Diseases?

Apparently so.

Although the layers of government bureaucracy are deep, Dr. Rodgers is in my opinion, not the most appropriate selection to run one of the world's largest funders of diabetes and kidney research since his knowledge is really not much deeper than that of many family doctors. This is an appropriate question to be asking your lawmakers in Washington the next time you reach out to them for some other advocacy issues pertaining to diabetes.

While I would welcome comments on this topic, getting back to my parallel universe theme, I plan to reach out to some of the other autoimmune disease bloggers I've connected with since Invisible Illness Week because their stories are actually very interesting, and there may be opportunities for the Diabetes Online Community to collaborate with them on different areas of mutual interest. I hope you will return for my next posting I do on this topic!


Jonah said...

Vitiligo is another visible autoimmune disease.

I tend to think of type 1 diabetes as being pretty different from most other autoimmune diseases because of how end stage it is. You know- people with RA and lupus and multiple sclerosis and so on have progressions and remissions and that kind of thing- not so much with type 1. Although celiac is actually the most atypical and interesting autoimmune disease because we know what triggers the autoimmune attack and can stop the autoimmune attack in celiac without using immunosuppressants.

Karmel said...

I will be the first to say I don't know that much about the politics of disease in the areas you are addressing here-- but just in defense of the hematologists out there: the NIDDK doesn't include hematology in the name, but hematological disorders do fall under their purview (http://hematologic.niddk.nih.gov/a-z.aspx). Plus, before you write off blood-- all those immune cells we're so concerned about? T cells and B cells and macrophages? All blood cells. And while a hematologist is by no means an immunologist, when it comes right down to it, the most important thing is that the director knows what he's doing and can direct a large, bureaucratic body towards a common goal-- skills generally uncorrelated with the _kind_ of doctor you are :)

Three cheers for understanding other autoimmune disorders, though!

Scott S said...

Karmel, no one was writing off blood (at least that was not my intent), and yes, there are autoimmune diseases of the blood ... but, again, the challenge is how much of a priority leadership is putting into the issue, and it's clear with the revolving door of whom the NIDDK is sending that leadership does NOT view this as critical. I also noted that the bureaucracy in the NIDDK has been important, but we should remember that Dr. Rodgers has spent virtually his entire career in within the NIH and stepped into the current leadership role as a fill-in for someone who left to take a role in academia. But is he really the best choice to be running the NIDDK? That is open to considerable debate.

mensajes claro said...

Thats right @Jonah

Juegos de Motos said...

@ karmel , I don't know about politics neither.