Like many bills that are introduced into the Rhode Island House and Senate, House bill 5540 and others get little public attention. There is little space in a news feed to highlight all that comes before Representatives and Senators during a legislative session. H5540 would require the Rhode Island Department of Health (DOH) to create and maintain a website which informs the public and potential participants, “of all clinical drug, biological, or device products trials being conducted in Rhode Island and throughout the region.” To offset the cost of the web site, the proposed legislation gives authority to the DOH to sell advertising on the site.
The bill is sponsored by Representatives Joseph McNamara (Democrat, District 19, Warwick), Mia Ackerman (Democrat, District 45, Lincoln), Evan Shanley (Democrat, District 24, Warwick), Brian Newberry (Republican, District 48, North Smithfield) and Joseph Solomon Jr (Democrat, District 22, Warwick). A hearing on the merits of the bill took place before the House Committee on Health, Education and Welfare (HEW) on March 20th. Representative McNamara, Chair of HEW extolled the virtues of the bill saying in part, that Rhode Islanders need to know about “world class research” that is going on in their own backyard. There was one speaker in support of the bill: Robert Dulski – Director of Government Relations at the American Cancer Society, Cancer Action Network.
Let me put this bill in context from a personal point of view and give you some insight as to why I believe this bill, and others like it, need more public involvement.
For the past 30 years or so I have volunteered and have been a voice for environmental issues. For the past four years, I’ve helped lead a statewide coalition opposed to the permitting and siting of a fracked gas power plant proposed for the middle of the woods in northwestern Rhode Island along with opposing the LNG facility at Fields Point in Providence.
In my day job, I work as a documentary filmmaker. In the thirty-plus years of documentary filmmaking, I have worked on films about ancient cultures, agriculture, climate change, food, health care and more. As part of a documentary film on brain cancer, I have been following the lives of five Rhode Island patients in various stages of and with different types of brain cancer. I have traveled all over the United States, England and Norway talking with other brain cancer survivors, victims’ families, doctors and researchers on what happens after diagnosis. And I have SKYPED, texted, e-mailed and met over one-thousand patients, care givers, doctors and researchers from all over the world on brain cancer.
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H5540 asks the DOH to create and manage a state sponsored web site highlighting clinical and research trials that are specific to Rhode Island. The premise is that people in Rhode Island would want to know about local trials or research studies especially when the research center is connected with world class doctors and/or a research hospital based in Rhode Island. While the proposed legislation seems laudable giving added visibility to Rhode Island based research studies, there are a few issues that are troubling to me as someone who has experienced and explored what happens once patients receive a terminally or debilitating disease diagnosis.
First, I have had the privilege of recording and learning about the lives of five individuals with brain cancer. In working with them, I have followed each of them to doctor’s appointments, MRI visits, learning about new research and trials, talked with family and friends. I’ve been a witness to their celebrations, their joys and sadness, and the harsh emotional and financial depression that comes with the progression of the disease. Many of you will know, as I do, that people with a terminal disease cling to hope: they search for any trial, any research study that may offer an extension of life or a cure no matter the validity of that study or the location.
H5540 may have the unintended consequence of giving patients too little information, or referring patients to another web site that may not be as reliable or tainted with mis- or erroneous information. The National Institute of Health, United States National Library of Medicine ClinicalTrials.gov was the one web site that we used during my twelve year production. The patients I followed use this web site along with their own research and in consultation with their Primary Care Physician to make their choices. Even though the federal web site may not be perfect, this one is the “go to” place for clinical trials and research studies. I would not want a state sponsored web site in fear of promoting certain studies while ignoring others. I do not want a state sponsored web site to dilute the robust federal web site.
Second, the cost of producing and maintaining such a site is enormous. As Rhode Island has a budget shortfall, the additional cost of duplicating what is happening at the federal level makes no sense to me.
Third, and most troubling, to offset the production and maintenance of the site, H5540 gives DOH authority to sell advertising space on the web site. I have searched other state sponsored websites, mostly in New England, and none of them have advertising. While I know that this authority was placed into the bill to eliminate the “unfunded mandate” consequence of most proposed legislation, placing even curated advertising on a state sponsored website causes me grave concern. I have seen electronic head gear, seismic wafers placed on tumors, bells and gongs, bracelets and an array of questionable and dangerous drugs regularly touted as cures for brain cancer. If you are clinging to life, almost anything looks good. Once its displayed on a state sponsored web site it may look better.
Representative McNamara, who is Chair of House HEW, has been a leader and a champion in sponsoring cancer and drug legislation during his time in the Rhode Island House. He is not in question here.
What is in question, is the need and the consequences of this legislation.
So I sent a letter to DOH Director Dr Nicole Alexander-Scott listing these concerns. The response came from Neil Hytinen, DOH Chief Public Affairs Officer and Legislative Liaison:
“We are aware of the bill and share your cost and effectiveness concerns. We have spoken to the Chairman regarding a more effective and less costly option which would be posting links on our own website to the comprehensive website being maintained at ClinicalTrials.gov. We are already working on making that happen in the appropriate space on our website.
“Thank you for reaching out with your concerns.”
There are many reasons why we should all pay attention to what is going on in the House and Senate. H5540 is one of them.