Task Force Concerns

Concerns Regarding the Governor's Task Force and Its Direction

November 2010- A Lyme Disease Task Force was recently established by the (new) Governor of Virginia shortly after several bills that had been attempted and/or supported by members of a Lyme patient advocacy group failed to pass. Since it appears no patient groups are publicly claiming responsibility for the establishment of the Task Force, we can assume it was not specifically designed for or set up strictly by patients for the benefit of patients.

Therefore, we may also assume that it was created by those who, in an effort to perhaps deter future bill attempts or political actions by patients, may have designed it in the typical no-win fashion commonly seen in this type of maneuver. Common sense tells us if you have a Task Force in place that will be deciding the patient's fate, there is no need to have a bill addressing those same issues, either now or in the near future.

The Task Force's final conclusions are to be shared in a report to the legislators and the Governor. The insurance industry can then refer to it and it can be quoted in various venues. Since patient representatives and their doctors will have participated in the process it will be considered a "fair and balanced" Task Force and a final report, no matter what the conclusions may be, can be binding.

The 2010 Virginia bill that was slated to be "continued" after the session ended (1 of the original 5) can now easily be shelved, withdrawn or killed by opponents in the 2011 session, using the establishment of the Task Force as one of the excuses to shut the bill out. (Update- January 2011- As predicted, the legislator sponsoring the Lyme disease doctor protection bill has recently reported he will NOT be submitting last's years bill again this year due to the Task Force being established.)

It comes as no surprise that all Virginia Lyme related bills were dismissed in some form (five bills total), especially in a State that is home to the Infectious Diseases Society of America (IDSA) and where little has been done to educate the vast number of legislators over the years. Additionally, Virginia's "numbers" (reported cases) are not considered to be earth shattering, especially when compared to its neighboring state's numbers (Pennsylvania, Maryland).

Some of the reasons the Virginia bills failed and the new Task Force may prove to be very risky (if not dangerous) to both patients and the doctors treating them are....

1. The main players (Virginia legislators and new Governor) were not formally educated about Lyme disease and the controversy by Lyme literate physicians, Lyme advocates and patients in advance of their "let's do something" leap into the political arena. All legislators (the vast majority) should have been educated and should have agreed to support the bills, no matter the consequences to them personally, before attempting any political action anywhere. Even then, promoters of the bill(s) will loose some legislative support to the "other side" before it is over, for a variety of reasons.

2. It appears by the make-up of the Task Force, some of them will fight strongly for the IDSA "standard of care" to be adopted officially in Virginia. If this happens it will be utilized to educate doctors on how to diagnose and treat Lyme disease - a very dangerous situation indeed for all of us. This action's timing is also considered to be very poor (see #3) because there is no current alternate guidelines to counter the IDSA guidelines or even to be able to propose as a viable choice.

Members of a Task Force should NOT be given the responsibility or ability to determine the standard of care for patients or their physicians, especially when the science surrounding the disease is still unsettled and emerging. If the IDSA and others are successful in getting their way in Virginia (my money, sadly, is on them after reviewing this situation), other states can and will eventually fall victim to this tactic in years to come, with an outcome that will potentially, and negatively, affect millions of people in the future.

Additionally, physicians in Virginia will be open to more scrutiny and attacks, not to mention an increase in the number of sham peer review legal actions that have already occurred in the state. This can be predicted by what has happened in neighboring Maryland immediately following the actions by the National Capital support group when attempting to support legislators efforts to pass unacceptable bills there.

When the bills failed to pass, this small group pushed the Maryland Board of Physicians into "doing something" about a problem that didn't exist in Maryland, opening a Pandora's box in the process and being the spark that prompted the development of new and more stringent regulations on Maryland physicians.

3. There are NO favorable Lyme Disease Guidelines currently endorsed by the Guideline Clearing House (AMA, etc) that support "chronic Lyme disease" or the patient's view points (officially removed because they were over 5 years old). Patients and their doctors can beg and plead for mercy and can even toss in random studies that no one will bother to read, but in the end SCIENCE (good or bad) and established medical protocols supported by the CDC and Virginia Department of Public Health will be the determining factor and bottom line when making binding decisions.

Had a Task Force not been formed, the doctors in Virginia may have been better protected and able to use their discretion, with no set "standard of care" for the State hanging over their heads.

4. Currently the NIH, CDC, IDSA, IOM, American Academy of Pediatrics, Virginia Department of Public Health, a host of Specialty Societies (** see note below listing 14 medical Societies) and the Medical Society of Virginia, along with its numerous lobbyists, are supporting the "NO chronic Lyme" theory and are against long-term antibiotic treatment for what they refer to as "post Lyme syndrome".

That being the case and without patient-friendly Guidelines to counter those already in use and accepted by the majority of medical professionals, indicates to us that clearly no bills, nor a Task Force charged with setting diagnostic, treatment or education policies should be attempted at this time. We have a situation where all powerful players involved in, and surrounding the Task Force, are against what patients and their Lyme treating doctors require to be able to treat effectively.

Additionally, the insurance industry has a long history of being against long-term antibiotic treatment and against anything that will cost them additional money; therefore it is conceivable that they will not support anything but IDSA "insurance-friendly" protocols.

It is believed the pharmaceutical industry would be better served if post-Lyme syndrome were officially adopted and "chronic Lyme disease" discounted, as the drug makers would profit more by treating symptomatically than they would if doctors prescribed generic (off-patent) antibiotics.

5. Lyme Disease Task Forces are usually not able to positively change IDSA/CDC policies regarding Lyme disease and often conclusions in the final reports tend to make the doctors and patients situation worse, adding to the problems rather than solving them. As seen elsewhere, the Task Force deck appears to be stacked against patients and Lyme-treating doctors (pre-planned that way) and, as with other Task Forces, the outcome has probably been pre-determined, just waiting for the end of the dog and pony show to be set in stone.

Please read some of the quotes below made by Task Force members, speakers and legislators associated with the new Task Force and bills. These comments and views should have been researched earlier and used to deter those seeking to establish or join a Task Force, or attempt a bill. (My comments are in blue italics.)

"Del. Scott Garrett, R-Lynchburg and a physician, said, “The Infectious Diseases Society of America has stated categorically that there is no proven benefit to the long-term use of antibiotics for Lyme disease,” and that “the CDC has come out publicly with the same pronouncement.”

"Garrett serves on a House of Delegates committee that considered Lyme disease legislation last February and, with 100 Lyme disease advocates in the audience, delayed the measure until 2011." [Could that have been a strategic move to give them additional time to establish a Task Force stacked against non-IDSA/CDC protocols?]

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"Hazel said the task force would produce recommendations for Gov. Bob McDonnell regarding diagnosis, prevention, public education and medical treatment of Lyme disease."

“The Virginia Department of Health and the CDC do not recognize a chronic Lyme disease condition,” Phillips said, although they do acknowledge Lyme symptoms can continue for many months." [Bottom line- the Virginia Department of Health is already sure there is no such thing as chronic Lyme disease.]

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"MSV’s leadership, White Coats on Call participants, and lobbying team met with legislators throughout the General Assembly to advocate on behalf of legislation that would benefit the practice of medicine and work to defeat the legislation that put patients and the medical profession at risk."

MSV worked to defeat five bills on Lyme disease this session. The House Health, Welfare and Institutions Committee’s subcommittee #1 considered five Lyme disease bills (HB 36, HB 512, HB 897, HB 1017 and HB 1288) and passed a motion to “continue” four of the bills until 2011, a procedural move that ended consideration of the measures this session; the fifth bill was tabled. The bills were supported by patients who believed that long-term antibiotic use was the only treatment that offered them relief from the symptoms of Lyme disease.

MSV arranged for physicians to speak in opposition to the bills that would have established duplicative reporting requirements of cases of Lyme disease to the Board of Health and specify that treatment of Lyme disease with long-term antibiotics is permissible under Virginia code. [For some unknown reason a similar bill was also introduced in Maryland (the legislative sponsor was supported by and worked with DC advocates and ILADS secretary) to establish reporting requirements for Lyme disease. This bill would have duplicated the existing reporting requirements that were already in place years ago. Advocates and doctor groups must educate themselves, at a minimum, and educate all legislators prior to dancing in the political arena. Had they done so, these bills would not have been submitted and it would have made sponsors and supporters appear as if they actually knew what they are doing.]

Donald M. Poretz, M.D., an infectious disease specialist representing the Infectious Diseases Society of America (IDSA) spoke to the committee about Lyme disease treatment therapies. Harry Gewanter, M.D., a pediatric rheumatologist representing MSV and the American Academy of Pediatrics-Virginia Chapter, addressed physicians’ concerns about codifying standards of care in Virginia law.

As a result of the subcommittee meeting, Virginia Commissioner of Health, Karen Remley, M.D., M.B.A., FAAP, agreed to distribute a letter to all health care practitioners in Virginia to increase awareness of Lyme disease."

http://www.msv.org/DocumentVault/PDFs/2010-Legislative-Wrap-up-PDF.aspx

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ƒ You must also be aware of the political climate

in your state

before attempting bills!

"The 2010 General Assembly session started on a high note for

physicians with the swearing in of two new physician delegates, Del. T. Scott Garrett, M.D. (R-23rd District, Lynchburg) and Del. Chris Stolle, M.D. (R-83rd District, Virginia Beach), as well as the appointment of William A. Hazel Jr., M.D. as Secretary of Health and Human Resources by new Gov. Robert McDonnell.

Dels. Garrett and Stolle joined their physician colleagues in the

General Assembly, Del. John O’Bannon, M.D. (R-73rd District, Henrico) and Sen. Ralph Northam, M.D., (D-6th District, Norfolk) as members of their respective chambers’ health care committees. With all four physician legislators appointed to seats on the health committees, physician expertise and influence played a major role in the consideration of numerous pieces of legislation.

In addition, Del. O’Bannon was

appointed to chair one of the four Health, Welfare, and Institutions Committee subcommittees; Sen. Northam chaired the Health Care subcommittee of the Senate Education and Health Committee.

In addition, Keith Hare, who served as MSV director of government affairs from 2005 until Feb. 2010, was appointed by Gov. Bob McDonnell to serve as deputy secretary of health and human resources. He will work directly with Dr. Hazel.

**MSV would like to thank the following specialty societies for their efforts on behalf of physicians this session:

American Academy of Pediatrics-Virginia Chapter

American College of Obstetrics and Gynecology-Virginia Chapter

American College of Radiology-Virginia Chapter

Virginia Academy of Family Physicians

Virginia Academy of Sleep Medicine

Virginia College of Emergency Physicians

Virginia Commonwealth University

Virginia Primary Care Association

Virginia Psychiatric Society

Virginia Society of Anesthesiologists

Virginia Society of Eye Physicians and Surgeons

Virginia Orthopaedic Society

Virginia Society of Otolaryngology

Virginia Society of Plastic and Reconstructive Surgery

“Physicians know best how to reform the health care system with

the best outcomes. MSV is armed with data and makes decisions based on that data, not emotions. This makes for a more effective and potent argument to present and legislators are more receptive to the message,” he continued.

Dr. Kanter also noted that MSV and MSVPAC have had a lot

of success in helping elect physicians to the legislature and appoint physician leaders to key boards and commissions."

"Our state has taken on a different political trajectory with the

new administration headed by Gov. Bob McDonnell. He has made a very wise move that needs to be replicated throughout the U.S. by appointing a physician, and past president of MSV, William A. Hazel Jr., M.D. as secretary of health and human resources. Hopefully, we will be able to work closely with him and champion our causes through his wise and measured approach. We also have more physicians at the state legislature and they are bringing much needed insight and perspective to the committee hearings and health related legislation."

http://www.msv.org/DocumentVault/PDFs/2010-Legislative-Wrap-up-PDF.aspx

The News & Advance

Lynchburg, VA

Group tackles Lyme disease

Recognition of condition in state could lead to changes in medical practices

By RAY REED

Published: November 28, 2010

Buzz up!

A tick no bigger than a pin-head has put a state task force to work trying to decide what should be done about the growing problem of Lyme disease in Virginia.

The tiny black “deer tick” can produce a rash with a clear center and various painful symptoms that, unless treated fairly soon, can be hard to cure.

“Lyme disease is endemic,” or present, in the Lynchburg area, said Haley Phillips, epidemiolo-gist at the Central Virginia Health District.

An emerging recognition of Lyme disease in most parts of Virginia could possibly lead to changes in medical practices and standards if long-term sufferers of the disease get the recognition they’re seeking.

Most of the infection’s victims are diagnosed, treated fairly quickly with antibiotics, and recover fully — although their cases often don’t get into statis-tics reported by the Centers for Disease Control.

Some stages of Lyme disease can last longer, Phillips said — for six months or more.

Patients who have been cured are not the Lyme victims the Virginia task force is focusing on.

People who say they have chronically suffered from Lyme disease for years are the force behind a task force that was appointed in mid-October by Dr. Bill Hazel, state secretary of Health and Human Resources.

Lynn Aycock, of Lynchburg, said she’s one of Lyme disease’s chronic victims and suffered from it for 20 years.

An outdoor-sports enthusiast, Aycock said she’d had many tick bites over the years but never had the supposedly telltale bull’s-eye rash.

She had other symptoms, in-cluding chronic joint and muscle pain and even failing eyesight. Aycock said she researched Lyme disease herself, and found a doctor in Washington, D.C., who was “Lyme literate.” This doctor used a blood test called the Western blot, which her other physicians had not ordered.

The D.C. doctor prescribed a longer-than-usual course of the doxycycline antibiotic along with other antibiotics and supple-ments, Aycock said, and her pains were relieved.

“I got my life back,” Aycock said. “Within eight months I was able to do my sports again,” whitewater boating and riding horses, she said.

Hazel said the task force would produce recommendations for Gov. Bob McDonnell regard-ing diagnosis, prevention, public education and medical treatment of Lyme disease. It also will consider the impact of Lyme disease on children.

The task force plans to meet Tuesday in Fairfax County to hear testimony from experts.

The task force also will address a controversial area of medicine.

“The Virginia Department of Health and the CDC do not recognize a chronic Lyme disease condition,” Phillips said, although they do acknowledge Lyme symptoms can continue for many months.

Del. Scott Garrett, R-Lynchburg and a physician, said, “The Infectious Diseases Society of America has stated categorically that there is no proven benefit to the long-term use of antibiotics for Lyme disease,” and that “the CDC has come out publicly with the same pro-nouncement.”

Garrett serves on a House of Delegates committee that considered Lyme disease legislation last February and, with 100 Lyme disease advocates in the audience, delayed the measure until 2011.

Garrett agreed with Phillips’ analysis of the Lyme situation. “There are clearly reported cases here in Lynchburg,” Garrett said.

Spread by the deer tick in its nearly microscopic nymphal stage, Lyme disease’s early signs in people usually look like a circular red skin rash with a clear “bull’s eye” at its center. But not always; sometimes the disease is more insidious.

Before it attaches to a person, the nymphal deer tick may look like a piece of grit, a freckle or poppy seed. Once attached, it may, or may not, feel like a bump and cause a skin reaction. A tick in someone’s hair may go unnoticed.

Victims of Lyme disease may feel several of these symptoms: fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes, according to the Centers for Disease Control.

Ticks are most active from April through July, and even people who live an indoor life-style can get them just by going to their mailbox, Phillips said.

People who go outdoors should check themselves, their children and pets for ticks, Phillips said.

The Virginia Tech Extension Service offered this advice about ticks:

• Avoid tick-infested areas such as tall grass and dense vegetation.

• Don’t brush against weeds and tall grass.

• Wear light colored clothing so ticks can be found easily.

• Tuck pant legs into socks so ticks stay on the outside of pants.

• Conduct tick checks on children and pets every four hours.

• Use tick repellents that contain at least 30 percent DEET.

• Ask your veterinarian to recommend tick controls for your pets.

• Treat clothes with permanone (be sure to follow all label precautions).

Less than half of all deer ticks are infected with Lyme disease, according to university researchers.

Patients who see a doctor soon after the symptoms appear usually are diagnosed quickly, treated with the doxycycline antibiotic, and recover.

According to the Extension Service, four kinds of ticks are commonly found in Virginia: The lone star tick, the American dog tick, the brown tick and the deer tick.

• The lone star tick, which has a small whitish dot on its back, is found mostly east of the Blue Ridge Mountains.

• The American dog tick is found mostly west of the Blue Ridge Mountains.

• The brown dog tick appears throughout Virginia.

• The deer tick is found primarily in the northern and eastern parts of Virginia. In addition to Lyme disease, it can carry ehrlichiosis, which also responds to doxycycline treatment.

The lone star tick and the American dog tick can carry Rocky Mountain spotted fever, the extension service said. Spotted fever occurs much less often than Lyme disease, according to CDC statistics.

http://www2.newsadvance.com/news/2010/nov/28/group-tackles-lyme-disease-ar-680414/

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http://www.msv.org/MainMenuCategories/Advocacy/Legislative/2010-Legislative-Session/Lyme-Disease/Lyme-disease-bills-considered-Monday.aspx