Mesothelioma Empowerment

Ban Asbestos Legislation

Our law firm has been closely involved in the evolution of asbestos ban legislation from its inception. With the help of Dr. Robert Cameron, who at the time served with me on the board of the Mesothelioma Applied Research Foundation, an institution that we co-founded, the first draft of the ban legislation incorporated an innovative and comprehensive mesothelioma research and treatment programs.

In 2005, while at MARF, we were contacted by Senator Herb Kohl to draft language for a similar mesothelioma research program to be included in the FAIR Act, a bill this firm adamantly opposed. This bill, also known as the "Asbestos Bail-out Bill," fortunately died in the Senate, thanks in part to the efforts of individual MARF directors who took the lead opposing the bill. However, when the bill died, so did the mesothelioma research program.

The research program was revived when the Ban Asbestos Act finally got traction and sailed through the U.S. Senate in October 2007. In February 2008 my firm adopted a position that agreed with MARF regarding the Senate's Ban Asbestos Act, SB 742. At the time, we further supported the companion House bill sponsored by Representative McCollum that mirrored the Senate bill. Since adopting that position we have been engaged in an ongoing dialogue with stakeholders in the advocacy community who have helped us monitor the evolution of the legislation.

Thanks in large part to my friends at the Asbestos Disease Awareness Organization, I have taken a harder look at SB 742, which purports to ban asbestos but in fact does not. The official stance of ADAO has also led to significant improvements in the substance of the House bill. Testimony by Linda Reinstein, Dr. Barry Castleman, Peg Seminario, and Dr. Richard Leman before the House Subcommittee on Environment and Hazardous Materials, material provided by Dr. Aubrey Miller of EPA, information from Terry Lynch of the International Association of Heat and Frost Insulators, and support from the board of the Pacific Heart, Lung & Blood Instituteall contributed to our better understanding of the legislation. The ethical and reasoned approach towards the bill taken by Dr. Michael Harbut, more than anything, got us off of high center.

The medical community and MARF's insistence that research funding remain a meaningful part of any legislation also helped keep our attention focused on the long term needs of asbestos sufferers. Asbestos disease victims provided crucial perspective and input, with people like June Breit and Paul Zygielbaum continually reminding us that behind the numbers and legislative maneuverings, real human lives are at stake.

These factors, combined with the important differences in the House's legislative procedures, have encouraged us to expand upon our original position and push for even stronger, more aggressive, more advocate-friendly legislation than we ever thought possible.

A strategy for effective ban legislation

We believe that the current status of asbestos legislation in the House presents America with an unparalleled opportunity to enact a sweeping, comprehensive ban and to fund asbestos disease research at historic, outcome-altering levels. The linchpin of the strategy is unity among the advocacy community. All stakeholders - MARF, ADAO, patients, families, medical experts, and trial lawyers - must unite. Political trends within the House have made it clear that a consumer-oriented asbestos bill will only advance if the advocacy community presents a united front.

A deal gone wrong

Senate Bill 742, sponsored by Sen. Patty Murray, banned the sale and distribution of asbestos containing products. After all parties had agreed on the bill's language, asbestos industry representatives met with Senate staffers at the last minute and changed the word "products" to "materials," then sent the bill to the floor for a vote, where it passed unanimously.

Asbestos containing materials, of course, are statutorily defined as anything with more than 1% asbestos by weight. The exemption suddenly opened the door for the continued sale, distribution, and contamination of hundreds of asbestos products, as long as the product was 99% asbestos-free. Industry has been licking its chops, waiting to exploit the loophole and roll the dice that enforcement will be weak. The industry's machinations to first create the standards, then fabricate compliance, while funding junk science that certain kinds of asbestos at certain levels are safe, are the stuff of living nightmares. The exemption, which has absolutely no scientific, public health, moral, or economic rationale, would help perpetuate the worst man-made public health catastrophe in our nation's history.

After passage, the trick was discovered, and outrage ensued. The very groups who had sung praises to the legislation now attacked the bill. A schism erupted between the advocacy groups, because even though most now opposed the toothless bill, a few felt that passage of something was better than nothing at all, particularly since the research funding provisions had gotten through unscathed. This opened some groups to the very charges that had been leveled against the asbestos industry, in a slightly altered context: they were willing to trade a few million research dollars in exchange for the intentional poisoning of hundreds of thousands more Americans. It opened others to the charge that they were sinking any hope of an asbestos ban.

The asbestos industry has neatly exploited this rift, because their pro-asbestos message is unified and effectively presented. The distrust created in the advocacy community by this fundamental disagreement has fragmented the advocacy groups, making it difficult to effectively lobby for a genuine ban and research funding provisions.

Battle of the bills

The moment the Senate bill passed, companion bills sprang up in the House. One, sponsored by Rep. Cohen of Tennessee and now withdrawn, replicated the language of Sen. Murray's initial draft and banned asbestos-containing products. Another, sponsored the very next day by Rep. McCollum of Minnesota, mirrored the bill passed by the Senate, allowing the sale of asbestos-containing materials as long as they didn't have more than 1% asbestos content.

Advocacy groups such as the Asbestos Disease Awareness Organization opposed the McCollum bill. Advocacy groups such as the Mesothelioma Applied Research Foundation and our law firm supported the flawed bill on the theory that it was better than nothing at all, and because we believed that re-opening the discussion about the ban provision would put research funding at risk.

We were wrong. Instead of improving the ban's chances, advocating for the exemption in the House bill will doom it.

The legislation fell under the jurisdiction of the Energy and Commerce Committee, chaired by the most powerful man in the House, John Dingell of Michigan. Because the legislation covered an asbestos ban as well as research funding, it had to be split up between the two subcommittees according to their respective turf: Environment and Hazardous Materials was tasked with drafting the ban provisions, and the Health subcommittee was tasked with drafting the research funding provisions.

This procedural difference on the House side has created an un-hoped for opportunity for the advocacy community. First, it resulted in a draft bill called the committee print, which has now drafted a comprehensive, statutory asbestos ban after holding extensive hearings, and which has rejected the 1% exemption. The committee print is the only vehicle for asbestos ban legislation in the House. The McCollum bill, which mirrored the Senate's 1% exemption, is no longer on the table. Advocates who believe that the McCollum bill should be supported because of realpolitik concerns or because they don't want to re-open the research funding can of worms can put those concerns aside.

The committee print, with its comprehensive, statutory ban language, is the only version currently in play. Advocates can and should rejoice that the committee print's language takes the high ground, and rejects the cynical position now rejected by this firm that something is better than nothing. MARF will play a key role by updating its position as well, and we must also plan carefully to ensure that this language stays put.

Having our cake and eating it, too

Advocates have another, equally important reason to rejoice. The research funding provisions must be drafted by the Health subcommittee, and as yet there is no information on what those provisions will say. Those provisions, once and if they are written, will later be merged into the committee print, which will then be voted on by the Energy and Commerce Committee. Advocates now have an opportunity-if they can present a united front-to effectively show the Health subcommittee that its research provisions should be stronger than those proposed in the Senate bill. By stronger, we mean a research program that embraces all forms of asbestos related disease, from non-malignant pleural plaques all the way to malignant mesothelioma.

The committee print has already drafted powerful ban provisions, and the time is ripe to get more money for research as well. The fear that opposing the 1% exemption would jeopardize funding is moot because the committee print has already held hearings on this very subject, and incorporated its findings into the draft bill. The only two remaining steps are for the advocacy community to come together supporting the committee print's current tough ban language and come together asking for truly significant research dollars for all asbestos-related diseases, not just mesothelioma.

Effectively making our case

In order for the advocacy community to unite and act, the following items must be drilled home so that everyone understands where the legislation stands in the House today. It can't be overemphasized that the committee print is the only game in town-whatever legislation the House ultimately approves, it will be reflected in this legislative vehicle. It's currently our savior since it provides for a tough, statutory ban, and it's our opportunity to get real funding for asbestos disease. We're talking about early detection, risk reduction, prevention, diagnosis, treatment and pain management, among other critical yet historically either under-funded or unfunded priorities.

The negotiations are far from over, and the advocacy community should spend these next crucial weeks ensuring that the committee print's final form represents a tough, aggressive, advocate-friendly bill. The asbestos industry is already working the offices of congressional staffers. Their plan is to disrupt or derail the legislation in the House just as they did in the Senate, and to do it even more effectively by exploiting divisions within the advocacy community. We can disagree among ourselves as much as we like, but against the common enemy we must show iron resolve and unflinching unity.

There has been significant confusion about the status of the legislation in the House. Everyone in the advocacy community must understand, in outline form:

  1. The House turf: the Environment and Hazardous Materials subcommittee drafts the ban provisions and the Health subcommittee drafts the research funding language. The two then merge into the finalized committee print, which will become the Bruce Vento Ban Asbestos Act.
  2. The committee print is the only game in town. No other bills are being considered or have had hearings scheduled.
    1. The ban provisions in the committee print have closed the 1% exemption loophole.
    2. The research funding provisions have not been finalized. If we want stronger funding, it has to be negotiated now, quickly, in unison.
  3. At the subcommittee level two things must occur in order for the committee print to make it to the full committee
    1. Unity in the advocacy community
    2. A comprehensive, statutory ban without the 1% loophole-and the good news is that this language is already in place.
  4. There are crucial provisions in the committee print in addition to ban and research funding provisions, modification of which could derail the bill or make it toothless if passed
    1. Statutory ban v. rulemaking ban
    2. Type and length of chlorine, aggregate, and other exemptions
    3. Ban's effect on existing litigation
  5. The advocacy community must be prepared to negotiate in four key phases
    1. In the subcommittees as they finalize the committee print and it becomes a bill
    2. In the Energy and Commerce Committee itself
    3. On the floor of the House when it's voted on
    4. In conference committee between House and Senate
  6. Success will depend on
    1. Unity
    2. Speed
    3. Activating our supporters
    4. Compromise

Seizing the opportunity for the best House bill possible

Supporting a comprehensive, statutory ban

Our firm believes that the committee print's comprehensive, statutory ban is a boon to stakeholders in the advocacy community and that all stakeholders should support this comprehensive ban. We believe that preventing the future epidemic is just as important as finding better treatment and a cure, and that no American should ever have to choose between not getting sick or not getting treatment. We believe that each stakeholder has an obligation to come out in full force supporting the committee print's current ban language, and that we should all be aiming to reach the conference committee that resolves differences between the Senate and House versions with a tough, aggressive, advocate-friendly bill that bites like a bear trap.

Supporting meaningful research funding

Mesothelioma research has been grossly under-funded in the NIH relative to others cancers, but non-malignant asbestos diseases have not even garnered token support.

In reviewing the Senate bill's language on research funding we believe that Congress should also appropriate enough money to have an impact on asbestos-related diseases as well as mesothelioma. The research funding provisions of the committee print will be drafted by the House subcommittee on Health, and our firm's longstanding commitment to research convinces us that the entire community must support seizing the opportunity to present better numbers and scientific justification for the request.

SB 742 research funding levels for mesothelioma

SB 742 authorizes $50,000,000 over a five-year period to establish and maintain an asbestos-related disease research and treatment network to support the detection, prevention, treatment, and cure of asbestos-related diseases, with particular emphasis on malignant mesothelioma. A $10,000,000 annual commitment to research and to developing a mesothelioma "center of excellence" network is laudable if the alternative is no funding at all. However, this level of funding will only scratch the surface in terms of finding better treatment or a cure for mesothelioma.

FAIR Act funding levels for mesothelioma research

Two years ago, when advocates successfully stopped the asbestos company bail-out bill, MARF worked with great effectiveness to insert language into the legislation that would have provided for meaningful research. After careful scrutiny of this complex and ill-fated bill, Congress agreed that mesothelioma research needed at least $29 million annually to begin moving the ball forward. We agree with that analysis, and believe that the House's draft bill should incorporate similar language at similar funding levels.

Funding for all asbestos-related disease research

An asbestos ban should address related diseases in addition to mesothelioma such as asbestosis and asbestos-related lung cancer. An annual appropriation should be included in the committee print so that the tens of thousands of Americans who will continue to sicken from asbestos exposure have hope for better treatment and a cure. MARF's stature as a non-profit dedicated to finding better treatment for mesothelioma patients makes it a natural, respected, and important voice that should be brought to bear.

Funding for awareness, education, and patient outreach

The FAIR Act also included groundbreaking provisions that would have put meaningful resources into a mesothelioma educational resource center. This center would have served as a clearinghouse for education and patient outreach, for developing an international symposium on mesothelioma, and by awarding peer-reviewed grants for additional mesothelioma research projects. We believe that similar language should be included in the committee print, and that the existing 501(c)3 non-profits most engaged in asbestos disease awareness and mesothelioma patient outreach should receive government support in order to continue their extraordinarily important activities.

Conclusion

Almost a century has passed and hundreds of thousands have died since we first knew that asbestos killed. We echo the words of giants in the field, of the fathers, mothers, sons, and daughters who have seen their loved ones felled when we say that asbestos must finally be banned and that the illnesses it has spawned must be cured. We believe in negotiation and compromise, but on these two points? Never.

Now is the time for the community of advocates to play their strongest card: unity in the face of an evil and ruthless foe.

Roger G. Worthington
April 8, 2008