Friday, September 18, 2009

My Letter to MA Joint Committee on Health

To the Joint Committee on Public Health: September 18, 2009


Co-chairs - The Honorable Susan C. Fargo n Co-chair and The Honorable Jeffrey Sánchez and committee members: Senators Fargo, Montigny, Buoniconti, Chandler, Flanagan and Hedlund; Representatives Sanchez, Balser, Toomey, Murphy, Turner, Aguiar, Brady, Lewis and Humason.

I am writing to state that I support the intent of HR 1148. I am requesting that my letter be entered into public record as written testimony.

In the summer of 2005, I realized that I was persistently experiencing strange symptoms such as tingling and burning in my hands, feet and face. I could no longer organize myself, would forget things often, not recognize my friends, get lost going to places I had gone for years, had trouble walking from pains in my joints, some mornings I would wake without sight, my ears were ringing so loudly I couldn't concentrate, I had become extremely sensitive to light and sound, I was getting sudden, debilitating headaches and I was profoundly exhausted. Telling myself it was stress, I went to an acupuncturist. He informed me that he thought I had Lyme, that I should get tested and get antibiotics.

I had my first Lyme test in August of 2005. Because this test - which I later learned is 55% inaccurate - came back negative, it would take 2 more years, being told I might have MS or ALS or Fibromyalgia and any other number of frightening things before I would finally get more testing and a diagnosis. Because the insurance industry refused to pay for more tests and my doctor refused to test more, I had to pay over $1,000 and drive to a doctor in another state. My tests were, and continue to be, definitively positive for Lyme Disease.

This delayed diagnosis has had life-altering impacts. By the time I was properly diagnosed, I was completely non-functional. Many days I could barely walk. My hands and neck were shaking so much I couldn't hold a cup. I was having multiple seizures every day. I had to shut down my business. Treatment had minimal impact and we were struggling to understand why, until further testing revealed that the Lyme had damaged my auto-immune system to such a degree that I have now acquired Dysautonomia - my body no longer manages my heart rate, breathing, body temperature and digestion properly - and Chronic Inflammatory Demyelinateing Polyneuropathy (CIDP) - my nerves are damaged and I have progressively worse pain, fatigue, hyper-sensitivity, shaking, cognitive issues and more.

I am now, likely, permanently disabled. Though, it has been clear that I need treatment, my insurance company - Harvard Pilgrim - has retroactively denied my weekly injections of antibiotics for the Lyme Disease, though they definitely help me. For the CIDP, there is a common treatment, but it is extraordinarily expensive and I will need it long-term. The cost is $15,000 - $20,000 per month. Because the etiology of my CIDP is Lyme Disease, doctors are afraid to begin this treatment. They are afraid they will be liable for the costs if it is rejected by insurance and they are afraid to submit the treatment plan to insurance because they face the possibility of having their licenses reviewed for "over-treatment". Though CIDP has a known treatment, the very presence of Lyme Disease on my health record has made doctors everywhere afraid to treat me.

I am 46 years old and have had health insurance all of my life. Until 2005, I rarely needed to use it. Now that I have Lyme Disease it is, apparently, useless and all those years of healthy living where I saved the insurance companies a lot of money is meaningless. I am left to languish and possibly die. My family is on the brink of bankruptcy.

What is my 9 year old daughter learning about health care in America? That we don't care about those among us who are sick. It is more important for health insurance companies to make money. And so, she watches her mother, who once was a competitive athlete and successful business leader being transformed into an invalid while there is a known treatment that could help her.

I beg of you, please show my daughter that it doesn't have to be this way. Please let my doctors know that they can safely treat me. Please tell the insurance companies that they cannot profit at the expense of my life and the lives of tens of thousands of other Lyme Disease patients.

You are my only hope. Please do the right thing and pass HR1148.

Massachusetts physicians should be allowed to use their clinical judgment to diagnose and treat Lyme disease without fear of prosecution.

Monday, September 14, 2009

MA Legislative Hearing Next Week!

Received from the TickedOff group for distribution:

Here is the information for the upcoming hearing for HB 1148, filed by Representative Robert Hargraves, which will allow all Massachusetts physicians the ability to treat Lyme disease based on their own clinical judgment.

HB 1148 (pdf)

This post serves as an initial announcement, but will be updated during the coming week as we receive more information.

What: Public hearing on HB 1148 (Joint Committee on Public Health)

Date: Tuesday, September 22, 2009
Place: Boston State House Room A1
24 Beacon Street Boston, MA, 02108
Directions
Time: 10:00 a.m. (If you plan to attend, please try to arrive by 9:00 a.m.)

Note: We will be sharing the hearing day with other bills and our time will be limited. We must plan carefully in order to utilize the time that we are allowed to full advantage.

Members of the Lyme community are encouraged to participate in each of three ways:
  1. Written Testimony NEED YOUR HELP WITH THIS ASAP – Details to follow
  2. Attendance at the hearing
  3. Participation at the rally on the State House steps on the day of the hearing

    We will describe each of these opportunities in subsequent emails. We are trying to keep this information as simple and “user friendly” as possible. Please bear with us, as we strive to clarify and convey the relevant information.

We look forward to working together with you!