Wednesday, June 18, 2008

What's In a Treatment...

Earlier this week, I was fortunate to attend an event at Fenway Park (can’t ask for a better setting than that!) benefiting and celebrating the neuroscience department at BIDMC. On so many levels, it was a wonderful evening. I got to chat with one of my favorite medbloggers and BIDMC CEO, I met a fascinating and highly acclaimed memoirist, and spoke with all kinds of people doing creative things in health care.

The most exhilarating part of the evening was learning about the innovative research and treatments these doctors are working on, and the atmosphere of collaboration and care for the patient that guides it. Whether it was discussing yoga and dance therapy for Parkinson’s patients, hearing patients talk about stroke rehabilitation, or learning how noninvasive techniques can help patients with a variety of conditions, it was impossible not to feel the energy and potential gathered in that room.

You don’t need to be a neurology patient or even the friend or family member of one to appreciate these types of advancements. In fact, the idea that if given the appropriate time, resources, and environment researchers can get closer to developing more refined, targeted, and effective innovations for diseases is one that stretches across many disciplines.

By pure coincidence, I also stumbled across this Slate article, “Old Drugs, New Tricks” this week. Writer Darshak Sanghavi points out that in some of the major fields of medicine—like pediatric oncology, or cardiovascular disease—some of the most significant strides in increasing patient survival rates came from refining existing older drug therapies, rather than aggressively hyped new medications. Of course he points out cases where brand new drugs have made enormous (and unexpected) gains for patients, but his central point is a compelling one, and his thoughts about why some specialties are better equipped for the long-term, rigorous studies that make such refinement possible make a lot of sense.

As someone with multiple conditions of varying degrees of severity and treatment options, I find myself in an interesting position within this debate. When I was diagnosed with PCD and bronchiectasis a few years ago, my treatment regimen changed in many ways. While I had pretty much lived on steroids and all kinds of inhalers for most of my life (and spending weeks each year in the hospital and getting worse with each trip shows how well that worked out for me), I switched over to a system of rotating strong antibiotics. I still use inhalers and my nebulizer, but the steroids are no longer the first line of treatment. I also started daily chest physiotherapy, and that has made such a difference in my quality of life.

I mention all this because for me, some of the biggest improvements in my quality of life, and even my survival, are tried and true therapies. (This isn’t to say that some of my antibiotics aren’t newer generation, or that the vest I use when I can’t get chest PT isn’t a more modern version of the very physical and visceral pounding I get from my therapist, obviously.)

These things were already in existence and working well in some populations—but if it weren’t for advanced technology and research, I wouldn’t have known to use them because I wouldn’t have been able to get the correct diagnosis for such a rare condition. Without research and innovation, I’d still be chafing under the wrong diagnosis, living between hospitalizations, and causing yet more irreversible damage to my lungs.

(You can probably see now why the research I learned about the other night was so exhilarating, yes? Hope is an equal-opportunity phenomenon.)

So while my daily life involves many old-school techniques, my improved quality of life and my existence as a PCD patient speaks very much to new-school capabilities. It’s a collaboration between what we already know works for similar patients and what we’re beginning to understand about how specific cells and structures function—and based on what I learned the other night, it’s a collaboration that also stretches across all sorts of specialties and boundaries.

Clearly I can’t say if so many of us will ever have a cure for what ails us, but the more innovation and collaboration we have, the more we can refine treatments and understand the origins of our disease and target specific pathways, connections, and cells, the better. As the Slate article points out, it must be done in the appropriate way, and as recent events have shown me, when this happens, it’s a great thing.


Brittney said...

I'm on the front lines of research at the moment. I'm working in an immunology lab researching two autoimmune disorders (MS and post infectious myocarditis) on a cellular level. Before I started this job I didn't have a good grasp of what goes on, now I do. I'll be forever greatful to the scientists who conduct research, and trials. Without them most of us with chronic illnesses would be living our lives in a much different fashion.

Laurie said...

Couldn't agree more, Brittney! Good for you that you're in the thick of it, and keep it up!!! We need people like you!

Never That Easy said...

Hope is not only equal opportunity, it often comes in the least expected forms, so I'm always excited to learn about new research. You never know what's going to be a godsend for anybody. And a conference at Fenway: you are definitely lucky!

MJ said...

It's much the same in the area of migraine treatment, too. We have over 100 medications used as preventive treatment, and not a one of them was originally developed for migraine. One of the more popular types of migraine medication is from the old class of tricyclic antidepressants, which aren't used as much for front-line depression treatment, but frequently used for migraine patients.

Then, combine those with the new drugs: the triptans, developed specifically as acute treatment for migraine attacks. It's unquestionable that we need more migraine research, but in the meantime, I am thankful for all the off-label drugs we have at our disposal.

I imagine it's much the same for many other chronic conditions.

Hope is a great thing. Glad that you got so much out of the conference.

Be well,

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