In July of 2002, Cynthia Toussaint had a vision of an official Women in Pain Awareness Month featuring an informational hearing in the California State Senate. The vision included a long-term expectation of raising the profile of Women in Pain in California and gathering steam to make this a national issue. In August 2002, Cynthia authored and posted her online Women In Pain petition.
Beginning in October 2002, Cynthia began to contact California State Senators, Assembly members and their respective staffs to try to get someone to carry the resolution and host the hearing. Having spearheaded a California senate hearing about RSD in 2001, she always mentioned that fact to help gain legitimacy to get their ear for a better pitch. She is confident that the resolution and hearing would never have happened if she couldn’t have backed up the WIP initiative with her personal story, which she shared with each contact. Every office at the Capitol in Sacramento turned her down flat regarding both the resolution and senate hearing due to severe budget restraints. There was absolutely no support; just a lot of voices telling her she would never get either done. Being someone who interprets every “no” as a future “yes,” she persisted and prevailed.
During that period of repeated calls, Cynthia built relationships with many legislators and staffers. Paul Van Dyke from Senator Nell Soto’s office hit it off immediately with Cynthia and she cultivated this relationship for many months. Cynthia felt that there was hope with Paul because they liked each other and Senator Soto had sponsored a California Reflex Sympathetic Dystrophy Awareness Month resolution a few years prior to For Grace pursuing the Women In Pain issue. Through Paul, Cynthia learned that a former Soto staff member’s mother has RSD. Seizing upon this connection, Cynthia never let go of this promising contact. Eventually, Paul decided to do the resolution. Thus, after Cynthia and her partner John Garrett authored the language, Paul provided a new contact person at Soto’s office, Jackie Koenig, to shepherd the resolution. The resolution was approved January 2003 and the hearing was approved in March 2003.
In March 2003, once there was an agreement in principal to go forth with the resolution and hearing, chief liaison for the Women’s Legislative Caucus, Laura Metune, was assigned to coordinate the Capitol details. Laura’s name was given to Cynthia by State Senator Martha Escutia’s chief of staff, Suzanne Wierbinski. Susan, like so many individuals contacted, loved the WIP idea, but told Cynthia there was no money for it. However, she said, in no uncertain terms, the very next person Cynthia should talk to was Laura because the Women’s Caucus would provide her the best opportunity to forward a WIP hearing. By co-incidence, Laura and Jackie were quite good friends who talked about Cynthia and WIP a lot. This illustrates how important it is to network with as many folk as possible. They’re people too and they talk and share ideas. Cynthia believes the friendship between Laura and Jackie helped forward the process quite a bit.
When Laura at last got a possible approval for a “roundtable” (a less formal process), Cynthia told her, “No, it has to be a legislative hearing. How do we do that?” Laura said it would be necessary to get the Senate Health and Human Services Committee to commit as well. More contacts and networking ensued until the hearing and resolution were slated for October 2003. Politics stepped in and both were rescheduled for February 2004 due to the recall.
The protocols of Senate hearings dictate that there is usually a lead Senator chairing the hearing. In this case, there were three high profile Senators from the Women’s Caucus who co-chaired the hearing. Senator Nell Soto co-chaired because she sponsored the WIP resolution. Senator Liz Figueroa co-chaired as she is chair of the Legislative Women’s Caucus. That caucus, along with the Senate’s Health & Human Services Committee, co-sponsored the WIP hearing. The chair of H & HS committee, Senator Deborah Ortiz, was the third co-chair of this event. Senator Figueroa was particularly committed to this hearing as she sits on For Grace’s board; to induce attendance from the caucus, Senator Figueroa sent out media advisories and “save-this-date” memos.
Cynthia and Laura jointly determined the best grouping and sequencing of potential speakers. They broke it up into three panels; Framing the Issue; Personal Stories and Academic Research—Patient and Advocacy Perspective; Response From the Medical Community. Filling in each of the three panels proved to be easy and challenging at the same time. Beginning in November 2003, Cynthia reached out to her contacts in the medical, support and education fields to find speakers to testify at the hearing. All of the contacts were either willing to testify or they recommended someone. A combination of Cynthia’s own research and knowledge of the pain community (i.e., Dr. Steven Richeimer testified at the RSD senate hearing making an extremely positive impression with his knowledge and compassion; Dr. Scott Fishman and Cynthia did a speaking engagement together and he always comes to mind as an extraordinary resource who brings so much to the “pain table”; Maggie Buckley and Susan M. Shinagawa were suggested to Cynthia via Pam Bennett at Purdue Pharma; Dr.Diana Adams was suggested via Penney Cowan—who could not attend from ACPA--provided the “well” from which to tap expert testimony.
Whenever Cynthia spoke with a candidate to testify, whether they were or were not available, she asked them for suggestions as to who they felt should attend. This is a key point as it ensured that the final list of speakers would be a well respected group of people with the power to make an impact. Another key point is that these people are all extremely busy and invited to speak regularly. If there had been a year to plan in advance, as opposed to a couple of months, everyone approached would have been able and willing to participate. Despite losing some key players in the field, the final groups of speakers were potently influential. Once the speaker list was finalized in January 2004, Laura put in follow up phone calls for the official invitations. Due to scheduling conflicts, the list of speakers came up short on the healthcare professional panel as two individuals were not available. Laura found two others at the last minute, to testify. Also, to assist two panelists to attend, For Grace submitted grant proposals and procured funding to underwrite their travel expenses.
The informational hearing held February 4th delved deeply into the topic of Women in Pain; in particular, it was an attempt to gain a more thorough understanding of the issues surrounding under-diagnosis of chronic pain and the role of gender in the under- treatment of pain, and if there was a legislative remedy to this problem. Senator Figueroa began the hearing by welcoming the panels of speakers and by introducing the issue of Women in Pain. Senator Soto’s opening remarks included the announcement that Senate Concurrent Resolution (SCR 42) had indeed been passed, officially designating February as Women in Pain Awareness Month in California.
The first panel of speakers sought to frame the issue with Personal Stories and Academic Research. Ms. Cynthia Toussaint, the founder of For Grace, shared her story about learning to live with Reflex Sympathetic Dystrophy and her WIP journey, framed by testimonials from her petition, which had brought the diverse group present to the hearing room. The validity of the topic was reinforced by academic research presented by Professor Diane Hoffmann, Associate Dean at the University of Maryland School of Law. Dr. Hoffmann is coauthor of “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” which was published in the Journal of Law, Medicine & Ethics in 2001.
The second panel of speakers presented the Patient and Advocacy Perspective. Ms. Susan M. Shinagawa of the Intercultural Cancer Council shared her personal story as a breast cancer survivor and chronic pain patient. Ms. Shinagawa’s story moved most everyone in the room to tears. Maggie Buckley explained Ehlers Danlos Syndrome with an emphasis on the importance of pain as a diagnostic criterion for a little understood disorder. She also talked about some tips for improving the communication of pain to doctors. The third speaker in this panel was Dr. Kathryn Padgett of the American Academy of Pain Management. Dr. Padgett, who shared statistical information on the undertreatment of chronic pain, emphasized that prescription opioids AND a multidisciplinary approach provide much needed relief for individuals suffering pain.
The final panel provided a thorough response from the medical community. Dr. Steven Richeimer, Director, USC Pain Management, spoke about treatment protocols. Ms. Sally A. Adelus, RN, Executive Director of Hospice in the Valley in Santa Clara County, shared examples of the types of treatment she has witnessed for pain patients. Dr. Scott Fishman, Chief of the Division of Pain Medicine at the UC Davis Medical Center, also spoke about treatment protocols and gave examples of how patients fared in a variety of circumstances. Finally, Diana Adams EdD, Adjunct Clinical Assistant Professor, Department of Psychiatry and Behavioral Sciences at Stanford University Medical School, presented some of the history behind pain terminology and treatments. All of the speakers in this group illustrated that there are compassionate doctors out there who know a great deal about this subject and reinforced the point that there is still much to learn about pain—and specifically, women in pain.
As a result of a behind the scenes contact drive, hundreds of letters, emails, and phone calls were received by Senators and Assembly Members making them aware of the hearing. Thus, six Senators and two Assembly Members attended the hearing on February 4th. This is remarkable because an informational hearing such as this is typically sparsely attended. By making their voices heard, Californians let their Senators and Assembly Members know that this is an important issue to their constituents. Present were Senator Liz Figueroa, Senator Nell Soto, Senator Sheila Kuehl, Senator Edward Vincent, Senator Wesley Chesbro, Senator Richard Alarcon, Assemblywoman Patty Berg, and Assemblywoman Gloria Negrete McLeod. In addition, the audience gallery was standing room only.