BILL ANALYSIS                                                                                                                                                                                                    






                                 SENATE HEALTH
                               COMMITTEE ANALYSIS
                        Senator Deborah V. Ortiz, Chair


          BILL NO:       SB 1683                                      
          S
          AUTHOR:        Scott                                        
          B
          AMENDED:       As introduced
          HEARING DATE:  April 19, 2006                               
          1
          FISCAL:        Appropriations                               
          6
                                                                      
          8
          CONSULTANT:                                                 
          3
          Park / ak
                                        

                                     SUBJECT

                 Pharmaceutical information:  clinical trial data

                                     SUMMARY
                                         
          Requires pharmaceutical manufacturers to register all  
          clinical trials and publish all clinical trials results on  
          the federal clinical trials database for every medicine  
          they sell in California, regardless of when the clinical  
          trials were initiated or completed, or where they were  
          conducted.

                                     ABSTRACT  

          Existing federal law:
          1.Requires the Secretary of Health and Human Services (HHS)  
            to develop a publicly-accessible registry of clinical  
            trials for serious or life-threatening diseases and  
            conditions.

          2.Requires the sponsors of investigational new drug  
            applications to submit to the registry created by the  
            Secretary of HHS a description of the purpose of each  
            experimental drug, eligibility criteria for participation  
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            in the trial, the location of clinical trial sites and a  
            point of contact for people interested in enrolling in  
            the trial.

          3.Prohibits any new drug from being introduced or delivered  
            for introduction into interstate commerce, unless  
            application has been approved by the Food and Drug  
            Administration (FDA).

          4.Prohibits an approved drug from being marketed or  
            promoted for uses not specified in an application and  
            approved by the FDA.

          5.Exempts trade secrets and confidential commercial or  
            financial information, among other information, from  
            disclosure by federal agencies under the Freedom of  
            Information Act. 

          Existing federal regulation:
          1.Requires clinical trial sponsors to submit an  
            Investigational New Drug (IND) application to the FDA for  
            clinical investigation of a new drug or new indication of  
            an approved drug, with certain exceptions. 

          2.Requires review and approval from an Institutional Review  
            Board (IRB) before a clinical study can be initiated  
            under an IND.

          3.Defines an IRB as an appropriately constituted group that  
            has been designated to review and monitor biomedical  
            research involving human subjects, to ensure that a  
            clinical trial is ethical and that the rights of study  
            participants are protected.

          4.Authorizes an IRB to approve, require modifications in  
            (to secure approval), or disapprove research, or to  
            suspend or terminate approval of research that is not  
            being conducted in accordance with the IRB's requirements  
            or that has been associated with unexpected serious harm  
            to subjects. 

          5.Requires annual reports, safety reports (including  
            adverse event information) and protocol changes, among  
            other things, to be reported to the FDA and IRB for all  
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            clinical trials conducted under an IND.

          6.Requires drug sponsors to submit a new drug application,  
            including clinical data or information relevant to an  
            evaluation of the safety and effectiveness of the drug  
            from any source, prior to approval for marketing a drug  
            for a specific purpose.

          Existing state law:
          1.Regulates the packaging, labeling and advertising of  
            drugs under state department of health services.

          2.Requires drugs sold, delivered, or given away in the  
            state to be approved through a new drug application or  
            through the State Department of Health Services (DHS).

          This bill:
          1.Makes findings and declarations regarding the need for  
            the state to better protect California consumers who take  
            pharmaceutical products and the lack of publicly  
            available clinical trial data.

          2.Requires a pharmaceutical company, as defined, to make  
            publicly available information, as specified, for every  
            new and ongoing clinical trial, for every completed  
            clinical trial, as well as an explanation of any  
            uncompleted clinical trial that the company conducts or  
            sponsors for every pharmaceutical drug that the company  
            sells, delivers, offers for sale, or gives away in the  
            state. 

          3.Requires a pharmaceutical company to make the required  
            information publicly available by posting on to  
             www.clinicaltrials.gov  or its successor Web site by  
            certain dates, as specified.

          4.Authorizes the Director of DHS to adopt additional  
            reporting requirements and rules for implementation.

          5.Requires each pharmaceutical company to submit an annual  
            report to the Attorney General certifying that the  
            company is in compliance with the provisions of the bill.

          6.Makes violation of provisions subject to a civil penalty  
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            of an undetermined amount.

                                  FISCAL IMPACT  

          Unknown.

                            BACKGROUND AND DISCUSSION  

          Need for the bill
          The author writes that too often, pharmaceutical companies  
          have only publicized clinical trials that are favorable to  
          their products, and that doctors and patients do not have  
          enough access to information regarding pharmaceutical drugs  
          and their testing history.  The author cites the Vioxx  
          trial as an example of the need for increased consumer  
          information.  The author believes this bill is the least  
          costly and most direct way to provide information to  
          consumers.

          The author further states that, in addition to tackling  
          safety concerns, the bill also addresses the problem of  
          overpriced and underperforming medicines.  With this bill,  
          researchers, doctors and the general public will have  
          access to all of the health and effectiveness studies  
          conducted by manufacturers.  The author contends that once  
          accurate comparisons can be made on issues of safety and  
          effectiveness, drug companies may have a harder time  
          convincing doctors and patients that expensive brand-name  
          drugs are worth two or three times the price of generic  
          medicines.
           
           Drug approval and public safety
          Drug approval is a rigorous process, which on average takes  
          about 8  years. However, recent congressional hearings on  
          the FDA's role in protecting public health in the cases of  
          Vioxx and Paxil call into question whether the current  
          regulatory process adequately protects consumer health. In  
          the case of Vioxx, nearly two years passed before a label  
          change was made by the FDA in response to a study Merck  
          submitted finding that heart attacks were more common in  
          Vioxx patients than patients on another drug. Merck  
          voluntarily withdrew Vioxx from the market in September  
          2004. In the case of Paxil, in 2004 the FDA required  
          manufacturers to place a warning in bold print alerting  
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          consumers that the drug could cause suicidal tendencies in  
          children and teenagers. News stories reported that the  
          manufacturer had such evidence as far back as 1997. These  
          cases raise the question whether more direct and fuller  
          disclosure of clinical trials can provide added protection,  
          where the FDA regulations or enforcement fall short.

          FDA drug approval process
          Before any investigational new drug is approved for  
          marketing, drug companies must conduct different types of  
          clinical trials:
           Phase I are initial studies to determine the metabolism  
            and pharmacologic actions of drugs in humans, the side  
            effects associated with increasing doses, and to gain  
            early evidence of effectiveness.  May include healthy  
            participants and/or patients. 

           Phase II are controlled clinical studies conducted to  
            evaluate the effectiveness of the drug for a particular  
            indication in patients with the disease or condition  
            under study and to determine the common short-term side  
            effects and risks. 

           Phase III are expanded controlled and uncontrolled trials  
            after preliminary evidence suggesting effectiveness of  
            the drug has been obtained, and are intended to gather  
            additional information to evaluate the overall  
            benefit-risk relationship of the drug and provide an  
            adequate basis for physician labeling. 

          Phase I and Phase II trials are performed on a small number  
          of subjects (generally 20-80 people in Phase I; 100-300 in  
          Phase II), while phase III trials, often noted as pivotal  
          trials, typically involve several hundred to thousands of  
          subjects.  Phase III trials are used to extrapolate what  
          effects of a drug would be on a population at large.   
          Additionally, companies sometimes conduct Phase IV studies.  
           Phase IV are post-marketing studies (i.e., after the FDA  
          has approved a drug) to delineate additional information  
          including the drug's risks, benefits, and optimal use. 
           
           According to the FDA, a drug company generally submits at  
          least two pivotal trials (phase III trials) in support of a  
          New Drug Application (NDA).  While the NDA does not require  
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          submission of details of all clinical trials in full, the  
          NDA does require descriptions and analyses of each clinical  
          pharmacology study, each controlled clinical study  
          pertinent to a proposed use of the drug, each uncontrolled  
          clinical study, any other clinical data or information  
          relevant to an evaluation of the safety and effectiveness  
          of the drug from any source (foreign or domestic, including  
          controlled and uncontrolled studies of uses of the drug  
          other than those proposed in the application, commercial  
          marketing experience, reports in the scientific literature,  
          and unpublished papers).  Additionally, the NDA requires an  
          integrated summary of the data demonstrating substantial  
          evidence of effectiveness for the claimed indications as  
          well as a summary and updates of safety information.  NDAs  
          can often run in excess of 100,000 pages. 

          Role of Institutional Review Boards
          While the FDA ultimately approves or disapproves a drug for  
          a specific use, each clinical study is overseen by an  
          Institutional Review Board (IRB).  IRBs ensure that  
          clinical studies are conducted according to the guidelines  
          set in regulation, and that the rights of the human  
          subjects are protected.  When an IRB approves a study, the  
          IRB must provide continuing review at least annually and  
          keep detailed records set forth in regulation.  In  
          addition, clinical investigators must provide written  
          progress reports for all studies and report adverse events  
          directly to the responsible IRB.

          Adverse Events
          All adverse events must be reported through safety reports  
          and annual reports to the IRB and the FDA. The FDA must  
          receive reports of serious or life-threatening adverse  
          events within 15 days. According to the FDA, the agency  
          trends and tracks adverse events as they come in. For  
          serious adverse events, the agency may send out an  
          investigator to the trial site. Action taken depends on the  
          seriousness of the event, as well as any trends that  
          emerge. 
          
          While clinical trials have many reporting requirements,  
          levels of oversight, and requirements for investigators,  
          sponsors, IRBs, monitors and reviewers, gaps remain. 

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                 Lack of transparency. Although the Freedom of  
               Information Act requires federal agencies to disclose  
               requested information, one notable exception is  
               confidential commercial information. The FDA considers  
               all clinical trial data confidential commercial  
               information. The FDA will not acknowledge the  
               existence of an IND, unless it has already been made  
               public. Once a drug is approved, however, the FDA will  
               disclose its review of the new drug application (with  
               certain exceptions), which will contain summary  
               information on clinical trials. The actual trial  
               results, however, are still not disclosed.

                 Lack of data. Certain clinical studies are exempt  
               from the FDA's IND process, and, as such, are not  
               required to be reported to the FDA. Clinical  
               investigations that are exempt must pertain to a drug  
               that is legally marketed and must meet certain other  
               criteria: i) the investigation is not intended to be  
               reported to FDA as a well-controlled study in support  
               of a new indication for use nor intended to be used to  
               support any other significant change in the labeling  
               for the drug; (ii) the investigation is not intended  
               to support a significant change in the advertising for  
               the product; (iii) the investigation does not involve  
               a route of administration or dosage level or use in a  
               patient population or other factor that significantly  
               increases the risks (or decreases the acceptability of  
               the risks) associated with the use of the drug  
               product; among certain other criteria.

          Federal Clinical Trials Data Bank:   www.clinicaltrials.gov  
          To provide the public with better information and easier  
          access to clinical trials, the Food and Drug Administration  
          Modernization Act (FDAMA) of 1997 required HHS to establish  
          a publicly accessible data bank of information about  
          clinical trials for serious or life threatening diseases  
          and conditions.  FDAMA requires the sponsors of  
          investigational new drug applications to submit to the data  
          bank a description of the purpose of each experimental  
          drug, eligibility criteria for participation in the trial,  
          the location of clinical trial sites and a point of contact  
          for people interested in enrolling in the trial.  The Web  
          site currently contains more than 28,000 listings, from  
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          trials not yet registering to completed trials.

          According to FDA evaluations, compliance with the  
          legislation has been mixed:  "While progress has been made,  
          participation by the pharmaceutical industry is less than  
          expected despite a federal law, a final guidance document,  
          a targeted education program, and an easy-to-use web-based  
          data entry tool.  Some pharmaceutical companies do not  
          provide required clinical trials, some provide only limited  
          information, while others voluntarily list trials that go  
          beyond the criteria specified in the guidance."  The FDA's  
          2002 evaluation revealed that industry sponsor compliance  
          was at 30%.  In 2004, the FDA investigated compliance  
          specifically with regard to cancer trials and it found that  
          compliance by nonfederal clinical trial sponsors jumped  
          from 48% in 2002 to nearly 70%.  It did not investigate  
          compliance increase overall between those two years.  A New  
          York Times  editorial published June 1st noted compliance  
          varied widely by company.

          With regard to the posting of clinical trial results,  
          listing results on ClinicalTrials.gov is voluntary.   
          ClinicalTrials.gov contains a general "More Information"  
          data field, where sponsors can provide links to  
          publications, or other links that reveal results.  All  
          submitted links are subject to review by  
          ClinicalTrials.gov.  The 2004 evaluation suggests that  
          somewhere between 5-10% of records contain links or  
          references under "More Information."
          
          Pharmaceutical Research and Manufacturers of America's(  
          PhRMA) www.clinicalstudyresults.org
          In response to a growing call for transparency, the  
          pharmaceutical industry has developed an online  
          clearinghouse to provide greater access to the results of  
          its clinical studies.  According to PhRMA, the new  
          database, found at  www.clinicalstudyresults.org  , will  
          contain the results from all "hypothesis-testing" clinical  
          studies (mainly phase III and IV studies) completed since  
          October 1, 2002, for drug products that are approved in the  
          United States.  This will include both published articles  
          and unpublished study summaries.  This information will be  
          presented in a standard format that includes the sponsoring  
          company's name, the proprietary and generic names of the  
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          drug, a link or reference to the FDA-approved drug label,  
          the studied indication(s), a bibliography of published  
          studies together with a link (where available) to the  
          printed articles, and a summary of the results of clinical  
          studies that have not been published.  This summary  
          presentation will include information on the drug such as  
          the design of the trial, the number of patients studied,  
          the dose and mode of administration, and a summary of  
          conclusions and outcomes on the safety and efficacy of the  
          drug.

          According to a PhRMA representative, the group does not  
          keep track of the total clinical trials currently listed on  
          this Web site.  With regard to the clinical trial results  
          listed, approximately 41 companies are listed with 262  
          drugs with studies listed on the site.  For each study,  
          numerous results are identified.

          FDA and other policies on registering clinical trials and  
          posting results
           Food and Drug Administration (FDA).   The FDA states that  
          the collection and dissemination of information about  
          clinical trials and their outcomes is an important consumer  
          and health practitioner issue.  The FDA will continue to  
          encourage sponsors to put required and voluntary  
          information into ClinicalTrials.gov.  The FDA believes a  
          comprehensive clinical trials database can lead to more  
          efficient and timely discovery of the answers to scientific  
          questions that will result in more quickly learning about  
          the safety and efficacy of treatments for patients. 

           American Medical Association (AMA).   Since 2004, the AMA  
          has supported a national clinical trials registry that is  
          centralized, includes identifying information, trial  
          details and links to results or the reason a trial was  
          terminated.  The AMA has stated publicly that clinical  
          trial results should be made publicly available, and has  
          also suggested that registration should be a condition of  
          trial approval by IRBs. 

           International Committee of Medical Journal Editors (ICMJE).   
           In 2004, the editors of ICMJE stated that selective  
          reporting of trials distorts the evidence available for  
          clinical decision-making, and that trial results that place  
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          financial interests at risk are particularly likely to  
          remain unpublished and hidden from public view.  In  
          addition the editors stated: "When research sponsors or  
          investigators conceal the presence of selected trials,  
          these studies cannot influence the thinking of patients,  
          clinicians, other researchers and experts who write  
          practice guidelines or decide on insurance-coverage policy.  
           If all trials are registered in a public repository at  
          their inception, every trial's existence is part of the  
          public record and the many stakeholders in clinical  
          research can explore the full range of clinical evidence"    
          The ICMJE announced its position that trials must be  
          registered in order to be considered for publication.  New  
          trials will be required to be registered starting July 1,  
          2005, and ongoing trials must be registered by September  
          13, 2005.

           PhRMA  .  Under a new voluntary disclosure policy announced  
          in January 2005, PhRMA members have agreed to register  
          ongoing hypothesis-testing clinical trials for all diseases  
          to ClinicalTrials.gov by September 13, 2005.  This excludes  
          what PhRMA calls exploratory trials, which serve to "set  
          direction (i.e., to generate hypotheses) for possible  
          future studies, whereas, 'hypothesis-testing trials' serve  
          to examine pre-stated questions (i.e., to test hypotheses)  
          using statistically valid plans for data analysis and  
          provide firm evidence of safety and/or efficacy to support  
          product claims."  New trials should be registered on a  
          free, publicly accessible registry within 21 days of  
          patient enrollment initiation.  
           
          Under the voluntary disclosure policy, PhRMA members have  
          agreed to disclose the results (published and unpublished)  
          of all clinical trials, other than exploratory trials,  
          conducted on a drug that is approved for marketing on a  
          free, publicly accessible, clinical trial results database,  
          regardless of outcome.  Additionally, PhRMA recommends  
          disclosing trial results from exploratory trials if they  
          are deemed to have significant medical importance and may  
          have an impact on a marketed product's labeling.  PhRMA  
          recommends posting of results within one year after the  
          drug is first approved and commercially available, or for  
          trials completed after this initial approval, within one  
          year of trial completion, unless such posting would  
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          compromise publication in a peer-reviewed medical journal  
          or contravene national laws or regulations. 
          
          Maine and other states
          According to the author, more than 10 states have  
          introduced legislation attempting to make more clinical  
          trials information accessible to the public.  They range  
          from requiring registration of clinical trials and  
                                             disclosure of results for all trials conducted in the state  
          to requiring disclosure of trial results by state hospitals  
          and universities to requiring a fee to be paid by drug  
          manufacturers for public education on clinical trials, as  
          well as other variations on these approaches. 

          Only one state, Maine, has passed a law regarding  
          disclosure of clinical trial information. The Maine law,  
          passed in 2005, requires drug manufacturers to disclose  
          clinical trial information and results for prescription  
          drugs advertised in the state.  The law directs the Maine  
          Department of Health and Human Services to maintain this  
          information on a Web site, and collect fees from the  
          manufacturers to support a clinical trials database.  The  
          law also makes violation of these requirements subject to a  
          fine of up to $10,000, under the Maine Unfair Trade  
          Practices Act.

          Federal legislation
          The following bills are pending in Congress: 
           S.470 (Dodd, Grassley, 2005) and H.R. 3196 (Waxman,  
            Markey, 2005).  Both would expand the scope of  
            ClinicalTrials.gov and establish a database of clinical  
            trial results.  While these bills are similar, they are  
            not identical.  Both exclude early trials (with  
            exceptions), apply only to future trials, require trial  
            results to be submitted within one year of completion  
            (with exceptions), and allow for imposition of fines.  In  
            the case of Dodd-Grassley, a fine of $10,000 per day.   
            Both bills have been referred to committee; neither has  
            been heard.


            S. 930 (Grassley, 2005) and H.R. 4429 (Tierney, 2005)  
            establish the Center for Postmarket Drug Evaluation and  
            Research within the Food and Drug Administration (FDA).  
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            Requires the Director of the Center to conduct activities  
            to ensure the safety and effectiveness of FDA-approved  
            drugs and licensed biological products. Allows the  
            Director to withdraw or suspend approval of a drug or  
            license for a biological product using expedited  
            procedures under certain circumstances. Transfers to the  
            Center the functions and duties of the Office of Drug  
            Safety. Both bills have been referred to committee;  
            neither has been heard.
           
          Arguments in support
          The California Public Interest Research Group (CalPIRG),  
          sponsor of SB 1683, writes that consumers and doctors are  
          not getting the full story about the safety and  
          effectiveness of pharmaceutical products.  CalPIRG cites  
          both Vioxx and Paxil as expensive and tragic examples.   
          CalPIRG states that as companies bury test results that  
          prove newer and more expensive medicines are no more  
          effective than older, more affordable ones, consumers are  
          left to pay the price.  The sponsor argues that requiring  
          companies to publish all health studies they have sponsored  
          for drugs they sell in California evens the playing field  
          for companies, medical professionals and patients.

          Consumers Union (CU) writes that drug companies now sponsor  
          more clinical trials than the federal government, but tend  
          to publicize only the positive findings in medical  
          journals.  CU states that although drug companies have said  
          they will voluntarily disclose clinical trial results, the  
          industry has been slow to live up to that promise.  CU  
          cites examples (Zoloft, Paxil, Vioxx) where pharmaceutical  
          companies did not disclose or publish clinical trial data  
          that showed negative results, and the FDA also did not  
          disclose their conclusions or act because it considered  
          these data proprietary.  CU contends that the public is  
          losing confidence in drug companies with these examples,  
          and there is widespread support in the health care  
          community, including the AMA, and the American Pharmacists  
          Association, for public access to clinical trial results. 

          Supporters state that SB 1683 would substantially improve  
          the information that health care professionals and patients  
          have so they can make better informed decisions about the  
          drugs they take, weighing the benefits with the risks of  
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          prescription drugs.


          Arguments in opposition
          PhRMA writes that the bill imposes significant additional  
          requirements that are not consistent with the intent and  
          operation of the federally-sponsored Data Bank  
          (  www.clinicaltrials.gov  ).  PhRMA also writes it is  
          concerned that competing state and federal requirements for  
          clinical trials will create a patchwork of regulations that  
          may have a chilling effect on the initiation of clinical  
          trials in California and creation of new medicines.  PhRMA  
          states that the bill will duplicate what PhRMA signatories  
          have agreed to post on  www.clinicalstudyresults.org  , which  
          posts the results of all signatories' clinical trials  
          (i.e., mid to late stages), both positive and negative,  
          completed since October 2002 for drug products that are on  
          the market.

          The California Healthcare Institute (CHI) writes that the  
          measure is overly broad, inconsistent with other state and  
          federal requirements, does not allow for publication in  
          peer-reviewed journals, and could cause undue delays in the  
          submittal of this information to the federal Health and  
          Human Services Agency.  Additionally, CHI writes that Phase  
          I trials contain proprietary information and no possible  
          public benefit could result from the publication of Phase I  
          trial results.  CHI states it is concerned about state  
          legislation in an area that federal law should control.   
          CHI believes that the Clinical Trials Data Bank, managed by  
          the FDA, is the appropriate vehicle for synthesizing,  
          coordinating and publishing clinical studies.

          AstraZeneca opposes this measure because it has created its  
          own Web site where results and other information about  
          AstraZeneca sponsored trials are posted.  AstraZeneca cites  
          three Web sites, including its own, where clinical trial  
          results can be found.  AstraZeneca believes the bill is  
          unnecessary given the wealth of information already  
          accessible. 

          Prior legislation
           AB 72 (Frommer, 2005) would have required sponsors of  
            clinical trials to certify that they have registered the  
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            clinical trials and that they will publish the results of  
            the trial, whether positive or negative, as specified.   
            Died on inactive file on the Assembly Floor.

           SB 380 (Alquist, 2005) requires health care providers to  
            report suspicious serious adverse drug events to the FDA.  
             Inactive on the Assembly Floor.

           AB 71 (Chan, 2005) establishes the Office of California  
            Drug Safety Watch (Office) within DHS to create a central  
            repository of information about the safety and  
            effectiveness of prescription drugs that are frequently  
            advertised on television.  In Senate Health Committee.

           AB 1674 (Richman, 2005) would have required the  
            Department of Managed Health Care (DMHC) to contract with  
            an academic institution or public policy research  
            institution for the establishment of a Center for Quality  
            Medicine to conduct periodic research on various issues  
            related to medical treatment data.  Vetoed by Governor.

           AB 2326 (Corbett, 2004) would have required the Office of  
            Patient Advocate at DMHC to publish a report card before  
            January 1, 2006, and update it annually thereafter, on  
            the safety, effectiveness, and cost of prescription  
            drugs, to be posted on DMHC's Internet Web site.  Failed  
            in the Senate Appropriations Committee.

                              QUESTIONS AND COMMENTS  

          1.Would disclosure of later stage clinical trial data  
            (Phase III and IV) suffice to cover the objectives stated  
            in the bill? Given the relatively small number of  
            subjects in the earlier stage clinical trials, it is  
            unclear if results of these trials would be as meaningful  
            for public safety as the later trials. 

          2.Certain clinical studies are exempt from the FDA's IND  
            process, and, as such, are not required to be reported to  
            the FDA.  Clinical investigations that are exempt must  
            pertain to a drug that is legally marketed and must meet  
            certain other criteria:  i) the investigation is not  
            intended to be reported to FDA as a well-controlled study  
            in support of a new indication for use nor intended to be  
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            used to support any other significant change in the  
            labeling for the drug; (ii) the investigation is not  
            intended to support a significant change in the  
            advertising for the product; (iii) the investigation does  
            not involve a route of administration or dosage level or  
            use in a patient population or other factor that  
            significantly increases the risks (or decreases the  
            acceptability of the risks) associated with the use of  
            the drug product; among certain other criteria.  The bill  
            would require reporting of trials that are currently  
            exempt for reporting to the FDA to  
             www.clinicaltrials.gov  .

          3.This bill takes a more rigorous approach than the Maine  
            bill or proposed federal legislation in that it requires  
            more data to be disclosed and applies to all clinical  
            trials for all drugs sold, rather than applying only to  
            future trials or only to trials that are intended to be  
            submitted to the FDA as part of an NDA.  Currently  , the  
            standard for the amount of data that should be reported  
            as part of a public  ly accessible  clinical trials  results  
            database  is unclear. Should the bill require DHS to  
            determine the scope of data that is needed to protect  
            public safety  ?  If further federal legislation or  
            regulation is forthcoming, would conformance with a  
            federal standard be warranted? 

          4.The author's office notes an error in drafting regarding  
            the reporting dates of clinical trial results.  
               On page 8, strike lines 4 through 8 inclusive, and  
               delete the phrase "given away in the state" in line 9.  
                Insert "For clinical trials with a trial completion  
               date on or after January 1, 2007, the sponsor of the  
               trial shall submit the information required pursuant  
               to Section 130653 to  www.clinicaltrials.gov  or its  
               successor Web site no later than 90 days after the  
               trial's completion.  For clinical trials with a trial  
               completion date before January 1, 2007, the sponsor of  
               the trial shall submit the information required  
               pursuant to Section 130653 to  www.clinicaltrials.gov   
               or its successor Web site on or before April 1, 2007."



                                                         Continued---










          5.Format for reporting results.  ClinicalTrials.gov  
            currently accepts results data in the form of a  
            publication citation, or a link to another Web site  
            containing results data.  Is this format for reporting  
            results of clinical trials acceptable to the author, or  
            does the author intend for the Web site to be an actual  
            repository of clinical trial results?  In the latter  
            case, if ClinicalTrials.gov does not agree to be the  
            repository, will pharmaceutical companies be subject to  
            the civil penalty?

          6.Technical Amendments
             a)   Page 5, line 1 - insert "in the trial" after  
               enrolled. 
             b)   Page 6, line 16 - add "a complete citation and, if  
               available, a hyperlink" at the end of the sentence.
             c)   Page 6, line 18 - clarify that employer refers to  
               employer during the conduct of the trial and the  
               preparation and publication of the results.
             d)   Page 6, line 21 - clarify that financial interest  
               refers to financial interest during the testing or at  
               the time of results posting.
             e)   Page 6, line 37 - add, "if any" after the second  
               "drugs"
             f)   Page 7, line 17 - insert hyphen for "e-mail"
             g)   Page 7, line 19 - Does the author wish to add  
               "including participants that dropped out of the trial  
               for whatever reason, prior to the termination date"  
               after "participants"? 
             h)   Page 7, line 18 - insert "prior to the termination  
               date" before the comma.
             i)   Page 7, line 34 - insert a comma after "site" and  
               remove the comma after "subject".
             j)   Page 8, line 11 - shall "promptly" be better  
               defined?

                                    POSITIONS  

          Support:       California Public Interest Research Group  
          (sponsor)
                         AARP California
                         American Federation of State, County and  
          Municipal Employees
                         California Alliance for Retired Americans
                         California Labor Federation/AFL-CIO
                                                         Continued---



          STAFF ANALYSIS OF SENATE BILL 1683 (Scott)            Page  
          17


          

                         California Nurses Association
                         Congress of California Seniors
                         Greenlining Institute
                         HealthAccess
                         Senior Action Network
                         42 individuals

          Oppose:   AstraZeneca
                         California Healthcare Institute
                         GlaxoSmithKline
                         Pharmaceutical Research and Manufacturers of  
          America






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