PowerPoint Presentation

The Michigan PBB RegistryCommunity DiscussionSharing Research FindingsSeeking Input from PBB Registry Participants

WELCOMEBathroomsEXIT DOORSPlease make sure you go to the registration table if you havent already done so. Introduce pine river; health department;Thank the NATIONAL INSTITUTE FOR ENVIRONMENTAL HEALTH SCIENCES for recognizing the importance of the St. Louis community and giving us the funding to include all of you in our research

If you are having your blood drawn please drink lots of water.

1Michigan PBB RegistryFamily History TableIndicate who worked at the Chemical Plant or was otherwise exposedThen list their children and grandchildrenIf you are waiting to participateA volunteer will be holding up index card with number

At the Transfer of Records Table you will get your PBB ID or use the Lab ID in your folderMPHI transfer of records. If you are not in MPHIs database 2

Nutrimaster

FiremasterPBB

MgOI know most of you know this story too wellbut ill briefly review why we are all here3

Nutrimaster

FiremasterPBB

MgOI know most of you know this story too wellbut ill briefly review why we are all here4TimelineJuly 1973-May 1974Michigan residents ate dairy, beef, and poultry products that had been contaminated with PBBs1976-1979Creation of the PBB Registry (MI long-term PBB study)Measurement of PBB in bloodHealth questionnaires1980PBB no longer produced in the United States5PBB Registry Long-Term PBB StudyAbout 5,000 individuals

People who ate contaminated foodFarm familiesMichigan residents

Chemical company workers

Children of people who ate contaminated food; children of chemical workers

at the time no one knew whether there would be any long term health effects of PBB so people who ate contaminated food were invited to be part of a long term registry to find out whether there were health effects of their exposure. so the health department enrolled people in a registry to keep in contact with them and to enable studies of their health effects. Children of exposed women were included in the registry.

In the early 1990s the chemical workers records were set aside and were no longer part of the registry or follow-up.Different and multiple exposures6PBB CharacteristicsExposure contaminated food, inhalation, skin absorptionStored in body fatRemain in the body for many yearsAfter 15 years, about half of the PBB has been eliminated from the bodyCan mimic or block natural hormonesCan be transferred from mother to child in the womb or through breast milk

PBB has some very unfortunate characteristics7

How is PBB Exposure Measured?Blood is collectedSerum is extracted Internal standard and acid addedExtract twice with solventRemove fatsConcentrate volume

Blood levels reported in ppb; Limit of detection = 0.010 ng/mL (ppb)Takes 3-6 months , each step takes a few weeks8Risk of Developing DiseaseRisk varies among individualsGenetics Diet, ExerciseOccupationEnvironmental ExposuresSomething to keep in mind is that everyone has a different underlying risk of disease - we all know someone - my aunt Ray who drank and smoked every day until she was 96. So your genes, lifestyle, and environmental exposures all combine to determine whether or not you develop health problems. So, your LIKLIHOOD OF DEVELOPING A PARTICULAR health problem doesnt depend ONLY on your exposure to PBB a lot of other factors are involved. [this is why our health questionnaires are so long!]9PBB Registry ResearchCompare the health of people with high vs. low PBB exposureThe low exposure group includes about 1,000 people with no PBB detected in their blood. Even if PBB was not detected in blood, people may have PBB in their fat tissueCompare the health of everyone in the PBB Registry to the general population.Periodic surveys to collect information on healthSome research on specific subgroups (e.g. chemical workers, women, daughters or sons)In order to determine whether PBB is causing a particular health problem, we need to see if theres a higher rate of that health problem among the people exposed to high levels of PBB compared to those with low level exposure. Earlier non-detect; blood vs. fat. We also compare rates of disease among people in the Registry to the general population of the US. For some diseases, theres not enough information to know whether there is an excess in the PBB registry. Thats why its important for everyone to participate, including those with low PBB exposure and those with no health problems.

In order to figure out if its the PBB, we need to have a comparison group.10Health Effects Noted Soon After the PBB IncidentSkin rashesHair lossMemory problemsMuscle and joint problemsSlight differences in immune system and liver functionEveryone including the chemical workers. There were some differences in immune function and liver function that were picked up on lab tests, but it wasnt clear whether these differences were large enough to cause noticeable symptoms. Selikoff; Anderson; Wolff studies11Do we want to say accident??Research Findings MI Chemical WorkersHigher PBB concentration in serum and fat compared to family members

Higher rates of skin symptoms compared to farmers

High rates of hypothyroidism than general population

Sperm count and motility similar to general population

Wolff MS, 1978, 1979; Landrigan PJ, 1979; Brown GG, 1981;Landrigan; Bekesi JG, 1979; Bahn AK, 1980; Rosenman KD, 1979; Brown GG, 1981

12Research Findings Farm FamiliesThose who ate contaminated food Men who ate contaminated foodThyroid problemsWomen who ate contaminated foodPossible changes to menstrual periodsLower estrogen levelsA few more cases of breast cancer than expectedNo increase in endometriosis, infertility or miscarriages

Based on our survey in 1996, we found that highly exposed women had slightly shorter menstrual periods (less than one day, on average), and slightly more bleeding (on average). Because this suggested there might be some hormonal changes, we asked a group of women to collect urine samples that could be tested for hormones. We found that the highly exposed women, indeed had lower estrogen levels. Now a slight change in hormone levels doesnt mean a change in your health, but it does give us clues as to what PBB is doing in the body. Overall there was no increased risk of infertility or miscarriages. We also looked at various cancers and found a few more breast cancer cases in the high exposure group then we would have expected. In a group of people this size - we expected 4 cases of breast cancer in the high exposure group and we observed 9. This could be due to chance. It will be important to continue to monitor cancer among the registry participants to determine if these numbers change. Does NOT include the chemical workers. When we did this research, the chemical workers were no longer in the registry.

13Research FindingsChildren Born After 1973, to Women Who Ate Contaminated FoodPBB can be transferred to children while in the womb or through breast milk Children born many years later can still be exposed Children are more vulnerable to toxic chemicals than adultsWe thought it was important to find out if there were any health effects among the children of people who ate food contaminated with PBB. WHO DID NOT EAT THE CONTAMINATED FOOD THEMSELVES.

14Research Findings Daughters Born After 1973, to Women Who Ate Contaminated FoodEarlier maturation - First menstrual period at 11.5 years compared to 12.5 yearsShorter statureAs adults - more miscarriages

among approx 300 girls average age at first menstrual period - 12.5 vs. 11.5. some animal studies have shown PBB can act as an estrogen; national trends: girls maturing earlier.15Miscarriages Among DaughtersTelephone interviews in 2003-2006, 73 women; 142 pregnancies; 27 women in high exposure exposure levels low < 1.0 =9%s.a.; medium 1-3 parts per billion; >3ppb=26% PLUS breastfeeding= 35%; explain ppb vs. ppm (this is the same concentration as endogenous hormones). Among women in the highest exposure group, those reporting a spontaneous abortion had mean age at menarche of 11.4 years compared to a mean age at menarche of 12.3 among women reporting live births. Among those least exposed no difference in age at menarche is seen (means: 12.1 vs 12.0 years). Preliminary data: lower estrogen throughout the cycle but particularly in the pre-ovulatory period.16Research Findings Among Sons Born After 1973, to Women Who Ate Contaminated FoodMore genital conditions (hypospadias) than the general populationSons of highly exposed women were more likely to have problems with the urinary or genital systemSons of highly exposed women had slower growth in childhoodThis is consistent with animal research that has shown that PBB can interfere with male hormones.17Research FindingsImportant Points PBB appears to be acting as an endocrine disrupter ThyroidReproductive systemChildren of exposed parents may be affectedThis is consistent with animal research that has shown that PBB can interfere with male hormones.18Chemical WorkersBring chemical workers back into PBB registry transfer records from MDCHBlood testing for PBB, PBDE, PCB, DDT, DDE, HBBGeneral Health QuestionnaireWhat are your concerns?

We have a limited time to obtain the records from the MI Dept of Community Health.

19PBB Levels, St. Louis

Collected december, 2013 at st. louis city hall.General population of US 0.01

20PBB Levels, Consumers of contaminated food

Collected over the past two years throughout the state AMONG registry members.

21PBB Levels, 1976-1978

At enrollment in the PBB registry (not including chemical workers).

22Womens HealthAged 18 - 57Reproductive Health questionnaire (online)Measure PBB and other chemicals in bloodMenstrual cycle calendarMeasure hormones in urine

23Womens Hormone Patterns

24Mens HealthHealth questionnaire

Measure PBB, PCBs, DDT, DDE, HBB and PBDE in blood

Hormones in urine

Semen collection at homePBBs, PCBs, DDT, DDE, HBB and PBDE

25Sperm AssessmentSperm count

Sperm velocity

Sperm size and shape

Sperm viability

26Why Participate?Contribution to science, public health and your neighborsInformation about your chemical exposureYour hormone levelsInformation about your menstrual cycles (for women)Semen analysis (for men)Physical examCompensation (up to $200)27Additional Ongoing Research Study causes of death for PBB Registry participants (now including chemical workers)Continue to study cancer occurrence Study additional concerns suggested by you

people in the pbb registry are getting older they are getting to the age where cancer, heart disease and other diseases (alzheimers, parkinsons) are becoming more common.

28We Need Your HelpWhat are your concerns?Michigan Health Department can no longer maintain the registry

as you know, the health department can no longer maintain the registry; most of you here have already consented to have your records transferred to emory university; if you haven't or know other people in the registry please take some consent forms and postage-paid return envelopes and urge anyone who was in the registry to consent. the only way we will be able to keep you informed and communicate with you is if you consent to have your records transferred. This is important not just for you but it may be important to your children.29For Questions or for More Information Please Contact us!PBB Registry Study Phone: 1-888-892-0074E-mail: www.pbbregistry@emory.eduWebsite : www.pbbregistry.emory.eduFunding provided by National Institute of Environmental Health SciencesUS Environmental Protection AgencyCenters for Disease Control and PreventionPlease call the PBB study phone and request a call back from any one of us. 30Small Group Discussions

Seeking Input from PBB Registry Study Participants

Why community engagement?The research needs to be relevant to those who experienced exposure to PBB and other chemicals.

Your concerns help guide future research.PBB Citizens Advisory Board

PBB Citizens Advisory BoardResource for registry members

Assist researchers in reaching out to PBB community

Work with the researchers to plan research that is responsive to the PBB community needs and interests.

34Group DiscussionHow this will work

Small Group DiscussionMove chairs into small groupsFacilitator for each group Each person is allotted at least 1 minute of input Facilitator records each persons comments without names or other identifying informationFacilitator notifies each person of time limitSecond round, anyone may add additional thoughts

Large Group ShareReporters summarize major points and suggestions from their tablePurpose : everyone gets a chance to speak and we also have a written record of each persons comments.

35DiscussionTopics:Describe your continued concerns related to PBB and other chemical exposures.What kind of information would be helpful regarding chemical exposures?

Format:Each person allotted 1 minute for input.Then, any person may add additional comments until end of the discussion.

Small Group Discussions