True Grit

Dr. Bret Williams, a 52 year‑old internal medicine doctor, lives in Hillsborough, North Carolina with his wife Julie and their three children: Christopher, age 25; Brian, age 17; and Kaitlin, age 15.

His troubles began in August of 2002, when Dr. Williams began to experience right‑sided chest pain. A CT scan revealed the presence of fluid in the right chest cavity. In ensuing months his symptoms resolved, then recurred periodically. He underwent thoracentesis, removal of chest fluid for analysis, but no diagnosis resulted. On March 13, 2003, Dr. Williams underwent a video‑assisted thoracoscopy with pleural biopsy at the University of North Carolina. On April 1, 2003, pathologists reported malignant mesothelioma, a tumor caused by asbestos exposure.

Dr. Williams sought out the best available care. After discovering very few treatment options, he decided to undergo extra‑pleural pneumonectomy (EPP), a radical amputation of the lung, the chest lining, and parts of the diaphragm and pericardium. He flew to New York City for this extensive surgery on May 8, 2003 under the care of Dr. Valerie Rusch, a well known thoracic surgeon. Dr. Williams experienced multiple complications after his operation. After returning home, he developed bleeding around his heart, requiring transport via life flight helicopter to Duke University Medical Center on May 28 for emergency surgery. He was then in intensive care for weeks, where medical staff had difficulty treating his irregular heart rate and weaning him off the respirator.

Although post‑surgical complications brought Dr. Williams close to death, he nevertheless insisted on receiving six weeks of adjuvant radiation therapy, which made him very sick and weak. Dr. Williams was too ill to travel back to New York City for follow‑up treatment at Sloan Kettering and instead received radiation at Duke. He was hospitalized twice during his treatments for dehydration, low blood pressure, and refractory atrial fibrillation.

Before his illness, Dr. Williams commuted daily to a small clinic in rural North Carolina, an area chronically short of medical care. He has served in a number of similar settings in the past, providing free or low cost health care to the poor. In 1996 Dr. Williams took his family to Bolivia, where he volunteered to help treat native populations in the Andes Mountains. He then opened a clinic on Daufuskie, an isolated sea island near Hilton Head, South Carolina, where his patients included descendants of slaves who speak Gullah, a distinctive language with African roots.

Because Dr. Williams has always put people over profit, mesothelioma could ruin his family financially. Still, true to form, in voicing his personal opposition to SB 1125, he asks the Senate to remember those less fortunate:

I am not a rich doctor. I have devoted my life to caring for underserved populations. I have done health care research emphasizing unmet needs in this country, worked in government clinics for the poor, directed a privately-funded free clinic, and volunteered to provide much needed care in the developing world. I ask for your consideration not only because I myself am an injured party - though I certainly am - but also for the many less fortunate than I, people without money, connections, medical skills, and knowledge. These victims can't hire lobbyists to influence your vote, but they vitally need your help.

The case against companies which poisoned Dr. Williams was filed in January, 2004 and does not yet have a trial date. Dr. Williams was exposed to asbestos during his childhood in Kansas, while working summer jobs, and while repairing his home.

Dr. Williams speaking in favor of banning asbestos and funding medical research for a cure. "Sadly," he said, "the asbestos bill before Congress (SB 1125) would save industry many millions of dollars, but would not divert any of that windfall to research or prevention." March 24, 2004, Washington D.C.

*** POSTED MARCH 19, 2004 ***

An Update -- 6/17/04

From Dr. Williams:

Someone recently wrote about pain control; her dad was having difficulty with narcotics wearing off too quickly. There are a couple of tricks well known to pain specialists, including 1) adding a phenothiazine (major tranquilizer) to potentiate the narcotic (such as compazine or thorazine, both also helpful for nausea); 2) adding an antidepressant, which may have an effect on pain threshhold independent of its effect on mood (sometimes people will take an antidepressant for pain control when they will refuse it for depression); 3) using antiepileptic drugs such as Neurontin, Trileptal, or Topamax (this seems to work for so-called "neuropathic" pain, often burning in character, that frequently contributes to prolonged post-surgical discomfort after EPP); and/or going to science-fictionoid interventions like the intrathecal pump another correspondent described. Any oncologist will be familiar with the range of options available, and most larger hospitals or medical centers also have pain clinics that can be extremely helpful. Even when cure is not possible, suffering can and should be minimized.

For cough -- a problem that I have had great difficulty with as well -- it may depend on where the problem is. Tessalon perles help irritation in the lung itself; benzonatate is actually a local anesthetic that is excreted by the lungs, so it does a great job of controlling cough due to small airway irritation. When the cough is caused by large airway or throat irritation (as mine is), better relief can usually be obtained through narcotics or various lozenges, including the licorice drops mentioned recently. When these standards fail, sometimes bronchodilators like albuterol help, sometimes antihistimines like Benadryl or Claritin, and occasionally major tranks like thorazine.

There is a lot of science involved, but for any individual finding the right treatment is like trying on shoes; you just go through the options until something fits.

I seem to have more trouble with cough after drinking cold liquids or ice cream. I have no idea why; anyone else have this problem?

I'm seeing patients four days per week now, very busy this week because my nurse practitioner is out after surgery for endometriosis. Feeling pretty good, but tired by the end of the day. Next CT scan in July, fingers crossed as usual but not thinking about it much at present. I'm getting vibes that the kids have surprises for Father's Day this year, certainly a brighter day than the last one!

Best to all

Dr. Williams: Asbestos companies, bankruptcy trusts, patients and trial lawyers should invest in medical research

Dr. Bret Williams is a 52 year old cardiologist in North Carolina who had an EPP in May of 2003. Dr. Williams is a strong advocate. He was recognized by Senator Murray for his outstanding public service in speaking out in favor of banning asbestos and funding asbestos cancer medical research. ATLA invited him earlier this year to speak to members of the senate's democratic caucus.

MARF is conducting an informal survey of asbestos victims and their relatives in order to learn their priorities when it comes to allocating chapter 11 asbestos debtor settlement trusts. MARF believes the debtor trustees need to discharge their duty of care and loyalty to asbestos victims by helping fund research designed to extend the survival of existing claimants and prevent a death sentence for future claimants.

Dr. Williams is a smart, compassionate, and dedicated public servant. His opinions regarding how each of us can help solve a public health crisis are entitled, in my view, to great weight. RGW

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From Dr. Williams, dated 9/9/04:

"To clarify my response: I really see adequate funding to be in the range of 10 - 20 M annually at first, increasing up to 2 to 3 times that amount over time. I'm having a little difficulty with the amount of money that changes hands per year. If we assume that 10-20 billion simoleons will be paid out each year, then about 1/2 % of disbursements should do it. I would be willing to split this with the trial attorneys. Practically, I don't think it likely that we'll garner any further contributions from industry, so the last question is no not because I don't think they deserve to pay but because I don't think it pragmatic to expect.

Furthermore, I am disappointed at the low rate of contributions by trial lawyers. I am more than happy to pay a share, but I think it fitting and proper that they should donate in the same percentage that they profit. I'm sure their stress levels are high, but we victims do the overwhelming majority of the suffering.

Best,

~Bret Williams"

An Update -- 9/20/04

Subject: MARF symposium

I'm not going to Vegas next month. Not clear if Julie will be recovered from her disk surgery (tomorrow morning at 8:30!), two kids on fall break, etc etc There will be some good science presented there, and it's exciting that research seems to be gaining momentum. The most interesting part for me, of course, would be meeting those of you who are going.

To repeat the basic information, the conference is titled "First International Symposium on Malignant Mesothelioma". It's really not terribly international, but there is one presenter from Australia. Some very good doctors and researchers will be present, including a few whose names are often mentioned on this site: Harvey Pass, Hedy Kindler, David Sugarbaker, Robert Taub, Robert Cameron, Nicholas Vogelzang, etc.

The program on Thursday, October 14 is less research-oriented than the next two days and includes sessions on care-giving, advocacy, grieving, and pain management. This day seems largely aimed at victims and families.

MARF (Mesothelioma Applied Research Foundation), the sponsoring organization, is a group financed largely by funds from a couple of guilty corporations and one legal firm. MARF's leadership is hard at work trying to increase contributions from the legal community.

I think it important that all of us who have counsel encourage them to help fund research. Personally, I favor devoting a percentage of all money that changes hands ­ I mean both funds received by victims and funds received by legal firms ­ to research in finding a cure.

The two most appalling things about the asbestos problem are 1) that use of this toxic substance has not been stopped and 2) that virtually none of the enormous amount of money being extracted from industry goes toward developing effective treatment. It's easy to lose sight of these facts as we deal with our individual pain and worries.

I look forward to hearing about the meeting from those who attend. I plan on going to the next one!

Best to all,

~Bret Williams

May 15, 2007:

Dearest Family and Friends of Dr. Bret Williams,

First of all I want to sincerely apologize if this email is the first communications you have received regarding this unfortunate news. Bret passed away on Saturday evening, May 12th. Julie and the family have made a concerted effort over the past two days to contact as many people as they could. In the spirit of providing those of you who may wish to attend his funeral service with as much advance notice as possible, we decided to send this email. All of you were included in one of Bret's last self-authored "Update" emails and I am generating this message using the "Reply-All" function. To those of you who are on the family listserve please excuse any redundancy.

Click here for a copy of the obituary, which will be posted in various newspapers around the country. Also listed are the directions to the church and information on local motels. I have extracted the following details from the obituary pertaining to the arrangements:

Dr. Williams' service will be on Friday, May 18th, at 11:00 a.m. at the Cedar Grove United Methodist Church, Efland-Cedar Grove Road, Cedar Grove, North Carolina. In lieu of flowers, the family respectfully requests that contributions be made to the Mesothelioma Applied Research Foundation, (877) 363-6376 or www.marf.org.

Again, I apologize for this forum and wish that it were possible to deliver this message personally to each and every one of you who knew and loved Bret during his remarkable life. Over the past 24 years, Uncle Bret has been an invaluable friend, mentor and family member to me. He will be greatly missed by many.

With deepest sympathy,

Brian Layh

Doctor Devoted Life to Helping Others (7/9/07)

More from Dr. Williams

My Kind of Town, Chicago. Dr. Bret Williams' first hand account of the Third Annual International Symposium on Malignant Mesothelioma, held in Chicago, Illinois (Oct. 21-22). (10/25/06)

"Dr. Frist, Do No Harm." -- Dr. Bret Williams, mesothelioma Survivor (12/13/05)

mesothelioma Patient Dr. Bret Williams' Outline of Alternative Medicines (10/26/05)

Doctor Wages Personal, Political Asbestos Battle (7/25/05)

Dr. Bret Williams to Sen. Leahy: The Bill is "a shameful industry bailout that fails to address the problem or the solution." (4/21/05)

Dr. Bret Williams to Members of the Senate Judiciary Committee (4/21/05)

Dr. Bret Williams to Sen. Frist: "First, Do No Harm! (Associated Press) (4/19/04)

First, Senator Frist, Do No Harm Considering the Asbestos Trust Fund. An Essay by Dr. Bret Williams (4/19/04)

Dr. Bret Williams' Speech to Ban Asbestos Act, Washington D.C: "Fix the problem. Give us Hope." (3/24/04)

Dr. Bret Williams to Sen. Harry Reid (D. Nevada) and Sen. Elizabeth Dole (R. North Carolina)
I am writing you to express my strong opposition to SB 1125, the so-called "Fairness in Asbestos Injury Resolution Act." (3/12/04)