Thursday, February 28, 2013

Speaking the Unspeakable to Legislators

The Unspeakable Bits; From A Life With MS

Earlier this month I brought up the subject of how difficult it can be for many of us living with this disease to find a doctor who specializes in multiple sclerosis.

As hundreds of MS activists will descend on our nation’s capital to meet with Congress and push for funding to better help people living with MS, I’d like to take this opportunity to add a positive postscript to last month’s blog. I believe that it illustrates why we should bring up the difficult topics … someone just might listen and help.

Although the metropolitan corridor of the Seattle area has a wealth of very well-qualified MS specialists, much of Washington state, like many areas in the country, suffers from a shortage of doctors who are specially trained to understand and treat MS. Such was the shortage of qualified docs in some rural areas that it was not uncommon for people to have to drive (or be driven) several hours in order to see their doctors.

While those outside of the MS community may not see the additional layers of hardship this kind of distance to a doc would bring, we know all too well what it entails: 
  • Long drives may require one (or several) days off work 
  • Many of us cannot make such long drives alone 
  • Finding a driver means someone else may have to leave work 
  • Fatigue can require expensive hotel stays 
  • With gas prices high, the financial burden only increases 
  • And the list goes on…

One particular barrier has been Washington’s restrictive medical licensing laws that make it difficult for foreign-educated physicians to get their medical license, even if they have received post-medical school, specialized MS training at American institutions.

Seeing a need and the serendipitous resource of a well-respected university teaching hospital (which houses the Western MS Center) and many other respected MS Centers, the National MS Society began working with Washington’s legislative bodies to craft legislation to remedy the situation.

With the dogged determination of local staff, volunteer activists and a particular ally in a respected representative who also happens to be an MS nurse, three years of hard work and lobbying paid off for the 12,000 people living with MS in the state.

Working across party lines – patients, care partners, staff, volunteers, activists, doctors, legislators and government officials – takes time, planning and immense effort. Only with such efforts, however, can we address the difficult questions, hardships and concerns of the MS community.

At the federal level, there are serious questions of funding for research and regulation of drugs and medical devices that MS activists will take to Capitol Hill next week and I wish them the very best of luck.

If you feel like it’s time to speak of the unspeakable bits of a life to your legislators, if you have concerns with the way that your government sees our disease, if you want to do something that will help not only yourself but our greater MS community, I encourage you to do as I have done and become an MS activist. Because how else, really, is it going to get done?

Wishing you and your family the best of health.

Cheers

Trevis

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.  

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