Testimony of Karen Forschner presented at the Hearing of the Committee on Labor and Human Resources

Testimony of Karen Forschner presented at the Hearing of the Committee on Labor and Human Resources First Session on examining the adequacy of the current diagnostic measures and research activities in the prevention and treatment of Lyme disease.

In 1985, our only child, Jamie, was born. Unfortunately, I had a bug-bite and the full range of Lyme disease symptoms while I was pregnant, and soon after my James birth, his symptoms started. During the pregnancy and after the birth, I was seriously ill with multiple problems, including serious joint swelling and pain. Shortly after giving birth, a doctor told me my crippling arthritis was a permanent condition, and I would remain on crutches until I required a wheelchair. However, there was this mystery illness called Lyme arthritis, and the doctor offered me two weeks of antibiotics just in case. If my symptoms went away, I had Lyme disease. My symptoms temporarily improved but once off treatment the symptoms came back - in full force.

At the same time all 5 of our beloved pets, 3 cats and 2 show dogs, became seriously ill after multiple tick bites and required repeated hospitalizations. As fate would have it, all of us contracted Lyme disease. Eventually all my pets were lost due to Lyme disease. Jamie was the light of our life; blond haired, blue eyed and smiling. By the time he was 6 weeks old, his health was in question. He had repeated vomiting and eye tremors. By 6 months old, he was showing signs of brain damage, eye problems, possible deafness, and had ceased to grow properly due to malnutrition. I questioned the doctors about whether my son could get Lyme from me during my pregnancy. I was guaranteed he couldn't. Our son was never exposed to ticks, and never had a tick bite.

To understand this disease I would like to explain what it did to our son's brain. The bacteria attacked the part of his brain that controlled Jamie's eye movements, causing his eyes to swing back and forth, turn inward and outward, and become light sensitive. This caused him to have double vision, motion sickness, inability to open his eyes outdoors, and blindness. Jamie's facial and tongue muscles caused his face to be partially or fully paralyzed and droop, resulting in drooling, loss of speech and loss of the ability to eat or swallow. It allowed food or saliva to go directly to his lungs. Children and adults started staring at him; loss of speech frightened him; feeding him by mouth became life threatening as repeated lung infections started. Eventually a partially collapsed lung resulted in multiple hospital stays. Jamie could not tell us he was scared, had a headache, or even that he needed the bathroom. Jamie became mute, malnourished, and frustrated. It affected Jamie's hearing, causing his hearing test to show he was totally deaf. Then Jamie started talking. The Lyme disease nerve involvement had affected the test. It affected Jamie's stomach, causing repeated vomiting. Since he was too weak to lift his head, we had to worry about his drowning during times he was lying down. It affected Jamie's nerve conduction, causing loss of muscle tone. Jamie was "floppy", and couldn't sit, crawl, feed himself or even hold his head up. This devastating set of involvements made Jamie 100 percent dependent - for life.

Tests, probes, biopsies, none could pinpoint the problem. When Jamie was one and a half, he had surgery to realign his stomach in an attempt to stop his life threatening vomiting. The surgery didn't work, and our son had a permanent hole cut into his stomach so that he could have a feeding tube installed to help keep him alive.

Tom's company, a CPA firm, declared Tom (my husband) didn't have that "zip" that potential partners needed, and proceeded to let Tom go. Today, family leave would have given him some time to take care of his devastating family life. As Jamie approached his second birthday, we found ourselves unable to provide the medical care Jamie needed, and were told to institutionalize him. I turned into my son's advocate, and spent several months researching medical literature. I realized Jamie had Lyme disease contracted through placental transmission. Transmission of infection during pregnancy and adverse outcome had already been documented in medical literature.

Then, a doctor saw permanent damage in our son's eyes - damage caused by a congenital spirochetal infection. Lyme disease is caused by a spirochetal bacterium. Then I found out about a test for Lyme disease resulting in Jamie and I testing positive! All of my son's symptoms were explained by the medical literature on Lyme disease. Life was good. I was told my son would get treated and the disease process would stop. Lyme was easily curable. Not true. Jamie was treated and relapsed several times. The meningitis in his brain had caused his head to enlarge to the size of a 14 year old. Clothes didn't fit unless adapted "for the multi-handicapped". How I learned to hate that word. When Jamie's relapses were in process, even his throat would collapse, and he spent time on life support. Media people were rushing out to see this child. I thought Jamie's story was of courageous struggle, but Dan Rather termed it the way the media saw the story: as "every parents worst nightmare". Those words will always haunt me. And then the nightmare started.

Over time he was on life support many times. When Jamie received treatment he would recover. His vision returned. His speech started. He started to feed by mouth. His vomiting stopped. He gained weight. His lips could kiss and his arms could hug. But, despite the dramatic and documented improvements, over the years local doctors and health officials would interfere repeatedly with our son's retreatment because Lyme was "easily curable". Despite the proved cause and effect of treatment, evaluated by many independent professionals, the label of "Lyme disease" caused paranoid behaviour and the withholding of life-saving treatment. When we asked the pediatrician for a three-month perscription of Amoxicillin to give our son to prevent a relapse, we were told that Amoxicillin was dangerous, and there was no proof the Lyme bacteria could survive the short-term intravenous medicine he had been given while on life support. Two weeks later, we were back to the pediatrician for a potential ear infection. The same pediatrician prescribed the now safe antibiotic Amoxicillin to prevent an ear infection that had not yet started. And, the prescription was issued in the same dose we had requested for a total of four months!

After attending a medical conference, I realized much information about Lyme disease was not reaching the medical community nor the public. And, with the help of many researchers, business, and lay people I established the first organization dedicated to Lyme disease - the Lyme Disease Foundation. Our mission was to provide an area where all of the scientific information could be discussed, not just the US version of "status quo". I gave up my career, and have spent 70 hours a week for the last 5 years as a volunteer. The sacrifices were great. We used up our life's saving in the process. Family provided us with food, clothing, holiday gifts for our son, and much support. We were in a race against time. Within two years, we had reached 210 million beople, and Lyme disease became a household word. Yet, there were no answers for our son. Doctors started fighting about whether or not my son should be retreated - even doctors not involved in my son's care! There was proof that Jamie's persistent infection continued to ravage his body, but electron microscope pictures of the Lyme bacterium proving current infection were not enough "proof" for the pediatricians. After all, they had talked to the state health department and an academic who recommended no retreatment.

In 1990, NIH's new test photographed the bacteria still in my son despite repeated treatment, I was dismayed. When I showed this to his pediatricians, the doctors cancelled my son as a patient because I planned to have him retreated, since he was heading into another serious relapse. Once Jamie was retreated he gained back speech, muscle tone, vision, eating, and many other little boy skills. He was finally mainstreamed, into kindergarten. You see, once you are ill there are many battles to wage. Jamie developed girlfriends, learned to operate an electric wheelchair, became potty trained and finally found the little boy inside the diseased body. We waited for over a year for the NIH test to be released in order to check our son's progress. As my son started to relapse again, I waited for the NIH test. It never came, and we waited too long.

Our son's last relapse started, and he began having seizures from the brain inflammation. Within 24 hours he was put on life support. The day he was declared "out of the woods", he died. His brain swelled up so much it killed itself. There was no tissue bank to send his remains to, so I had the unpleasant task of calling researchers around the country, and dividing up my son's body to send to different researchers. I loved this little boy, and would have died for him. Instead I was forced to arrange an autopsy. You see, the CDC has been denying congenital Lyme and death due to Lyme, despite numerous publications to the contrary, and I hoped this would provide proof that would help other children. Our insurance limits were used up. Jamie's medical bills had totalled more than 2 million dollars. The final cost to society for our son was around 2 1/2 million dollars. The majority of the cost was in disability care, and excessive non-Lyme disease testing. A minor amount was used for treatment with antibiotics.

And, yes, the autopsy proved Lyme disease bacteria was still in his brain. Our lifetime savings were gone. Our pets were gone. Our jobs were gone. Our baby was gone. If public policy was prevention oriented instead of anti-antibiotic hysteria oriented, my son would be alive today. I am not alone. Other mothers have also lost their children.

Thousands of us have worked toward finding the truth about this disease. Unfortunately, some parts of the government have an obsession with keeping the status quo. The true hero's of Lyme disease have been a mixture of public support groups, researchers and academics, front-line physicians, and some members of congress. HHS has proved to be a failure in coping with emerging epidemics, and Lyme disease patients are one more casualty from the current ineffective health care system.

We have not asked what the country can do for us, we have always tried working with the government. We are now demanding the government become responsive to the publics' needs. I think this disease may not be easy to diagnose, easy to treat, nor easy to cure. Sometimes, permanent damage may occur. There may even be deaths due to Lyme.

We have tried the old ways. It is now time for change

We will, Veromia, we will. Soon as we learn enough and get strong enough. Once someone gets sued over this crap, we can get some heads rollin......

I hope this heartbreaking testimony has the effect it should on the Committee.

I agree that once someone gets sued, people will finally start listening and taking this seriously. I still do not understand why this has not happened yet. In this day and age people sue of over the most ridiculous things and here people are literally losing their lives. I just don't get it.

I found karens story researching congenital lyme. I guess Karen is a part of the LDF helped do this along w burrascano, you guys prob saw this SENATE PASSES FIRST LYME DISEASE BILL

SENATE PASSES FIRST LYME DISEASE BILL

Public Given a Formal Voice in Government Tick-borne Activities

A seminal event in the history of the fight against tick-borne diseases
occurred last night when Senate bill S.969, “A bill to establish a
Tick-Borne Disorders Advisory Committee, and for other purposes” became
the first Lyme disease legislation to pass the Senate. This bill gives
the public a formal “place at the table” and input into government Lyme
disease and other tick-borne disorders education and research activities.

The bill, which now moves to the House for passage, establishes the first
Tick-borne Disorders Advisory Committee in the office of the Secretary of
Health and Human Services. The Lyme Disease Foundation (LDF), the premier
national nonprofit dedicated to tick-borne disorders, lead the team of
Community Groups who helped to craft the bill and its various versions as it
moved through the Senate. LDF chairperson Karen Forschner, BS, MBA, CPCU,
CLU, said, “I was overjoyed to learn the bill passed the Senate. >From the
time we established the necessity for this bill, through the crafting of the
legislation with the Lyme Society and others, we knew this was truly an
example of the government responding to public need. While the bill has
undergone the typical streamlining and tinkering that occur to bills as they
move through the Congress, the essential elements of the bill are clearly
intact. And, the name of the bill still remains.”

The bill establishes the first Tick-borne Disease Advisory Committee in the
office of the Department of the Secretary of Health and Human Services.
This committee includes government officials in a nonvoting capacity and public
(nongovernment) members with voting rights. Public members include an equal
number of: patients or family members of patients; representatives of
tick-borne disorder voluntary organizations; scientific community members;
healthcare providers; and representatives of state and local health
departments and national organizations who represent state and local
professionals. The legislation further empowers the “public voice” by
allowing committee members to add agenda items. The bill “Findings” section
clearly reflects the seriousness of tick-borne diseases.

In addition to establishing the Committee, the bill also includes $50
million over five years for government research and educational tick-borne
activities, and suggests priorities for government activities such as
developing improved tick-borne disease tests, surveillance and reporting
activities, and increased an emphasis on prevention.

Lyme disease is a chronic tick-borne disease, the most widely known
tick-borne disease.

Senator Christopher Dodd (D-CT) and Senator Rick Santorum (R-PA) were
instrumental in working with the Lyme community to introduce the bill and
develop the necessary support. Because key House members involved in Lyme
legislation approved of the Senate version, the bill is expected to pass the
House.

This summer the Lyme Disease Community Caucus was formed to include multiple
Lyme groups in order to present a unified voice to Congress and ensure that
voices from Lyme disease “non-endemic” areas were heard. Ms. Forschner said
it was in large part the work of the Lyme Caucus, which includes Lyme groups
from Connecticut, Pennsylvania, Michigan, Illinois, and New Jersey (with
input from other groups across the country) that ensured the legislation
would pass.

“As a patient and President of an independent Lyme nonprofit, I was pleased
to represent nonendemic states in this process,” said Linda Lobes of the
Michigan Lyme Disease Association “There is so much concentration on the
top ten states that the plight of patients suffering from tick-borne
diseases in the other 40 states is ignored. This bill includes us all.”

In one conference call, Ms. Lobes said she was negotiating with the Senate
staff members on the phone while conducting a garage sale. They waited
patiently while she was talking with the people about prices for items on
the tables. “The customers never realized I was negotiating with both them
and the United States Senate at the same time,” said Ms. Lobes. “ The
legislative aids were very accommodating and allowed me to complete sales,
before resuming discussions. It was a great example of average citizens
working with elected officials to provide input to protect their
constituents.”

Ms. Mary Halinski, President of the Lyme Society of Pennsylvania said, “The
Tick-Borne Disorder Advisory Committee Bill passing the Senate is a victory
for the entire Lyme disease community that has united behind this
legislation. For the very first time, the public and patients will be at
the table and have input into the direction of the government’s research,
prevention and educational activities regarding tick-borne disorders.”

Renee Thaler, Coordinator, Midwest Lyme Disease Task Force in Illinois,
states “ I am delighted about the bill’s passage. It is due to the
outstanding work of the LDF and activists working with them that was
critical to the passage.”

“This bill is an excellent opportunity for us to have pubic input into the
government activities that affect us all.” said Monte Skall, Executive
Director, National Capital Lyme Disease Association in Washington, DC.

“With the Senate's unanimous approval of this bipartisan Lyme disease
legislation, Lyme patients and their families are one step closer to the
revamping and strengthening of the federal government's efforts to combat
this terrible disease,” remarked Senator Santorum. “Senator Dodd and I
have a long history of working together on this issue, and we are grateful
for the tremendous efforts of the Lyme advocacy community to raise awareness
and mobilize support for this legislation. We look forward to working with
them and our colleagues in the House of Representatives to ensure swift
passage of this important measure so that we can begin maximizing the public
and private resources dedicated to fighting Lyme."

Senator Dodd who in 1988 became the first member of Congress to introduce
Lyme disease legislation, said the important legislation is only a first
step in the battle against tick-borne diseases.

Does Congressional interest end here? Absolutely not! “I pledge to continue
to work with my colleagues to ensure vigorous and effective oversight of the
legislation’s implementation in order to ensure that our intent if fully
realized,” said Senator Dodd. “It is my hope that the important work of
this, the first federal advisory committee on Lyme disease, will lay out a
concise and workable federal blueprint for combatting this debilitating
illness.”


For interviews:

• Linda Lobes, Michigan Lyme Disease Association - 888-784-5963
• Mary Halinski, President, Lyme Disease Society - 215-368-2559
• Karen Vanderhoof-Forschner, Lyme Disease Foundation - 860-558-9148

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The bill: 107th CONGRESS 969 ES 2d Session

OFFICIAL TITLE(unchanged): A bill to establish a Tick-Borne Disorders
Advisory Committee, and for other purposes.

(Engrossed as Agreed to or Passed by Senate)

AN ACT To establish a Tick-Borne Disorders Advisory Committee, and for
other purposes.

Be it enacted by the Senate and House of Representatives of the United
States of America in Congress assembled,

SECTION 1. FINDINGS. Congress makes the following findings:

(1) Lyme disease is a common but frequently misunderstood illness that, if
not caught early and treated properly, can cause serious health problems.

(2) Lyme disease is a bacterial infection that is transmitted by a tick
bite. Early sign of infection may include a rash and flu-like symptoms such as
fever, muscle aches, headaches, and fatigue.

(3) Although Lyme disease can be treated with antibiotics if caught early,
the disease often goes undetected because it mimics other illnesses or may
be misdiagnosed. Untreated, Lyme disease can lead to severe heart,
neurological, eye, and joint problems because the bacteria can affect
many different organs and organ systems.

(4) If an individual with Lyme disease does not receive treatment, such
individual can develop severe heart, neurological, eye, and joint problems.

(5) Although Lyme disease accounts for 90 percent of all vector-borne
infections in the United States, the ticks that spread Lyme disease also
spread other disorders, such as ehrlichiosis, babesiosis, and other strains
of Borrelia. All of these diseases in 1 patient makes diagnosis and
treatment more difficult.

(6) Although tick-borne disease cases have been reported in 49 States and
the District of Columbia, about 90 percent of the 15,000 cases have been
reported in the following 10 States: Connecticut, Pennsylvania, New York,
New Jersey, Rhode Island, Maryland, Massachusetts, Minnesota, Delaware,
and Wisconsin. Studies have shown that the actual number of tick-borne
disease cases are approximately 10 times the amount reported due to poor
surveillance of the disease.

(7) Persistence of symptomatology in many patients without reliable testing
makes treatment of patients more difficult.

SEC. 2. ESTABLISHMENT OF A TICK-BORNE DISORDERS ADVISORY COMMITTEE.

(a) ESTABLISHMENT OF COMMITTEE – Not later than 180 days after the date of
enactment of this Act, there shall be established an advisory committee to
be known as the Tick-Borne Disorders Advisory Committee (referred to in this
Act as the “Committee”) organized in the Office of the Secretary.

(b) DUTIES – The Committee shall advise and Secretary and Assistant
Secretary of Health regarding how to –
(1) assure interagency coordination and communication and minimize overlap
regarding efforts to address tick-borne disorders;
(2) identify opportunities to coordinate efforts with other Federal agencies
and private organizations addressing tick-borne disorders; and
(3) develop informed responses to constituency groups regarding the
Department of Health and Human Services’ efforts and progress.

(c) MEMBERSHIP. -
(1) APPOINTED MEMBERS. –
(A) IN GENERAL – The Secretary of Health and Human Services shall appoint
voting members to the Committee from among the following member groups:
(i) Scientific community members.
(ii) Representatives of tick-borne disorder voluntary organizations.
(iii) Health care providers.
(iv) Patient representatives who are individuals who have been diagnosed
with tick-borne illnesses or who have had an immediate family member diagnosed
with such illness.
(v) Representatives of State and local health departments and national
organizations who represent state and local health professionals.
(B) REQUIREMENT. – The Secretary shall ensure that an equal number of
individuals are appointed to the Committee from each of the member groups
described in clauses (i) through (v) of subparagraph (A).

(2) EX OFFICIO MEMBERS. – The Committee shall have nonvoting ex officio
members determined appropriate by the Secretary.

(d) CO-CHAIRPERSONS. – The Assistant Secretary of Health shall serve as the
co-chairperson of the Committee with a public co-chairperson chosen by the
members described under subsection (c). The public co-chairperson shall
serve a 2 year term and retain all voting rights.

(e) TERM OF APPOINTMENTS. – All members shall be appointed to serve on the
Committee for 4 year terms.

(f) VACANCY. – If there is a vacancy on the Committee, such position shall
be filled in the same manner as the original appointment. Any member appointed
to fill a vacancy for an unexpired term shall be appointed for the remainder
of that term. Members may serve after the expiration of their terms until
their successors have taken office.

(g) MEETINGS. – The Committee shall hold public meetings, except as
otherwise determined by the Secretary, giving notice to the public of such,
and meet at least twice a year with additional meetings subject to the
call of the co-chairpersons. Agenda items can be added at the request of
the Committee members, as well as the co-chairpersons. Meetings shall be
conducted, and records of the proceedings kept as required by applicable
laws and Departmental regulations.

(h) REPORTS. –
(1) IN GENERAL. – Not later than 24 months after the date of enactment of
this Act, and annually thereafter, the Secretary shall submit to Congress a
report on the activities carried out under this Act.

(2) CONTENT – Such reports shall describe –
(A) progress of the development of more accurate diagnostic tools that are
more useful in the clinical setting; and
(B) the promotion of public awareness and physician education initiatives to
improve the knowledge of health care providers and the public regarding
clinical and surveillance practices for Lyme disease and other tick-borne
disorders.

(i) AUTHORIZATION OF APPROPRIATIONS. – There is authorized to be
appropriated to carry out this Act, $250,000 for each of the fiscal years
2003 and 2004. Amounts appropriated under this subsection shall be used for
the expenses and per diem costs incurred by the Committee under this section
in accordance with the Federal Advisory Committee Act (5 U.S.C. App.),
except that no voting member of the Committee shall be permanent salaried
employee,

SEC. 3. AUTHORIZATION FOR RESEARCH FUNDING.
There are authorized to be appropriated $10,000,000 for each of fiscal years
2003 through 2007 to provide for research and educational activities
regarding Lyme disease and other tick-borne disorders, and to carry out
efforts to prevent Lyme disease and other tick-borne disorders.

SEC. 4 GOALS.
It is the sense of the Senate that, in carrying out this Act, the Secretary
of Health and Human Services (referred to in this section as the
“Secretary”), acting as appropriate in consultation with the Director of the
Centers for Disease Control and Prevention, the Director of the National
Institutes of Health, the Committee, and other agencies, should consider
carrying out the following:

(1) FIVE-YEAR PLAN. – It is the sense of the Senate that the Secretary
should consider the establishment of a plan that, for the five fiscal years
following the date of the enactment of this Act, provides for the activities
to be carried out during such fiscal years toward achieving the goals under
paragraphs (2) through (4). The plan should, as appropriate to such goals,
provide for the coordination of programs and activities regarding Lyme
disease and other tick-borne disorders that are conducted or supported by
the Federal Government.

(2) FIRST GOAL: DIAGNOSTIC TEST. – The goal described in this paragraph is
to develop a diagnostic test for Lyme disease and other tick-borne disorders
for use in clinical setting.

(3) SECOND GOAL: SURVEILLANCE AND REPORTING OF LYME DISEASE AND OTHER
TICK-BORNE DISORDERS. – The goal described in this paragraph is to
accurately determine the prevalence of Lyme disease and other tick-borne
disorders in the United States.

(4) THIRD GOAL: PREVENTION OF LYME DISEASE AND OTHER TICK-BORNE DISORDERS. –
The goal described in this paragraph is to develop the capabilities of the
Department of Health and Human Services to design and implement improved
strategies for the prevention of tick-borne diseases. Such diseases may
include Masters’ disease, ehrlichiosis, babesiosis, other bacterial, viral
and rickettsial diseases such as tularemia, tick-borne encephalitis, Rocky
Mountain Spotted Fever, and bartonella, respectively.

Passed the Senate October 17, 2002.

Post Edited (veromia333) : 5/25/2009 9:40:27 PM (GMT-6)

Oh my gosh. This is so very sad. I don't like seeing anyone suffer but kids suffering just kills me. I wish something was done sooner for this poor baby.

dont ever apologise for saying what you need to. thanks everyone for reading i wanted you guys to see this if you hadnt.

yeah thanks. It is criminal!

This is proof positive that lawsuits must commence. It seems this may be the only way to force Drs to LOOK at this disease and admit its existence! Once that has happened -- once Drs and insurance companies are held responsible for necessary treatment which they have denied and WITHELD, MORE research will finally begin.

scorpio1960 said...
I would love to see all of them sued and their licenses taken away. But how???

CLASS ACTION LAW SUIT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!