Notes from testimony presented on HB 1168 on March 6, 2012
[Names of presenters were not clearly heard and/or names below may be misspelled.]
Note- All patients did an excellent job presenting their personal stories for the Committee members. Their efforts are very much appreciated!
Testifying- Total Time Approximately One Hour for Hearing
Introduction of HB 11868 - Sponsor - Lyme is three separate types of bacteria transmitted by ticks. "This bill will simply provide state-wide efforts to highlight, promote and step up measures to fight Lyme disease." Lyme is a "critical problem" More alarmingly the incidence of the cases have increased significantly giving our state the 8th highest number of LD cases in United States.
Tammy Studabaker, Centreville - mother of sick child. Many complications with child. Lyme test was negative. Very heart-felt emotional testimony describing patient's plight and struggles. Asked for recognition so other kids don't have to go through pain.
Linda Brace and daughter Mandy - presented their stories and offered copies of documentary film to Committee members.
Barry Rossenfeld- Relator- out in woods a lot. Had a bulls-eye on stomach. Multiple surgeries, fights with doctors. 1993-2006 did many things to make himself feel better. 2006 - 2010 spent searching for doctor to treat him. Doctors scared. At Hopkins saw chairman of Infectious Diseases and got the standard response- "you don't have chronic Lyme disease". Told Committee that mosquitoes are carrying it now.
Vivian Williams- 25 years with Lyme- started treatment 3 years ago. Started with stiff neck. Had fibromyalgia and chronic fatigue symptoms. Nobody ever, ever said to her maybe it is Lyme. No rash seen. No idea she was bitten. Remission, then stress caused relapse, like rug being pulled out from under her feet.
Kathy Griffin- Nat Cap Lyme. She is not going to report her story- members of committee already heard them. Important, she said, is what you've not heard. Said Lyme is sexually transmitted. Children are born with it. Passing this bill can help with this. Said she was "glad to see eyebrows raising because that is that we want". Heard whispering today that it is getting in the blood supplies. Lyme Awareness is needed for other scary reasons.
Jeff Damon- Going to try to not give story details as it is in the written testimony that has been submitted into the record. Worked as a police officer in Maryland, finished Master's degree, has children, very active. Went to NIH, Hopkins, Mayo Clinic- 250 dr. appointments. Treated badly many times. Last November he was diagnosed with Lyme. He is available for more testimony if needed.
Julia Rice- Serves as Nat Cap Board member. Nurse. 7 years ago got Lyme. Talked about huge waste of human resources. Spoke about Maryland Health insurance plan- expenses paid by State of Maryland for illness.
Kathleen Hinkman- Tick removed from scalp. Long list of symptoms described. Nov 2006 collapsed and has been disabled since. Very emotional testimony. Treated with IV antibiotics. Needs to be treated for rest of life. Neuro-cog test at Hopkins. She was RN. She is thankful that after treatment she is alive, better, but different.
Diana Cream- (audio volume very low) Moved to Washington at young age. Camped on eastern shore with family. Set ticks on fire in ashtrays and on rocks and watched them explode when younger. On doxy for 6 months. Dec 2007 couldn't move. Said I am here to lend my voice. Under care of Lyme specialists. Brought along info to share from Ridgefield Lyme Disease Task Force in Connecticut.
??? Submitted her testimony- single mom of two small children. So sick 7 yr old had to help her get dressed. Have thousands and thousands of dollars of medical bills. Need public service campaigns. Her legislator was not aware of Lyme and tick borne diseases. Need public service campaign. One-time message pointless, need regular promotion. Breast cancer has good awareness campaign. Regardless of your opinion of the wording of the bill the message itself is critical. In not passing this legislation it would be a huge disservice to the state.
Sharon Whitehouse- Exec. Board of Nat Cap since 2005. Lives in Bethesda. Son got Lyme in 2001 in camp. Ten year struggle - 2 months IV not enough considering how long he had it. He is now 24- long time to rebuild immune system. Slept his way through high school and college. Hopes he will have normal life. She supports this legislation very much. Cocktail party talk with entomologist- acorns and tick cycle will produce lots of Lyme in 2012. VA and GA have passed bills of this nature. We border PA- has highest # of cases since 2005. Everything in the bill is true and documented- I can tell you that- there's not enough time to go into it.
Susan Green- Attorney- practice involves medical negligence - increase in inquires. Over last 5-10 years see increase in clients asking if they can sue their doctors for misdiagnosis. States she has an unusual perspective. Referred to preamble of 107 116 public law signed by Bush, stating Congress states Lyme tests are woefully inadequate. Hopkins and LymeMd (Jaller) has created a depository of body fluids. Thanks sent to Delegate Susan Lee and other sponsor. Ask yourself this question-cost analysis.
Greg Skull- Attorney, works for Nat Cap Lyme pro-bono. Nat Cap holds meetings. Stories you hear today don't even scratch the surface. Not asking them to practice medicine. IOM workshop- throughout officials expressed frustration in getting the word out about Lyme disease. Said some people have said this bill is unnecessary because Governor has proclaimed LD Awareness month in 2000 and 2007. Said he drafts requests every year for Nat Cap Lyme "and you know it is a laborious process". "Now we know and we have been told and we have been shown a letter that was shared with this committee that basically says this bill is unnecessary." "I would like to take the time to go through all of their arguments but there isn't enough time." Said "whoever wrote that letter obviously did not read this book" (held up, but not named- IOM Report?). He will submit a copy of book and summary to refute some of those arguments. [Went overtime while testifying.]
```````````````````````````````````````````````
Delegate Tarrant spoke. Said they have drugs for restless leg syndrome- anything being developed for Lyme? Response- The problem is no company is directly working on it. Docs believe it is easily treated. Controversy- large factor that believes if treated early and affectively it will be ok, but longer term treatment helps. Comment- Seems like Lyme doesn't have clear symptoms- spoke about "ring-worm". Response from Greg Skull- Dr. Stephen Dumler of our own Johns Hopkins feels improving diagnoses is crucial. States all experts call for more awareness.