Cancer in GlobalCancer in GlobalPerspectivePerspective
Joana D. Ramos, M.S.W.Joana D. Ramos, M.S.W.http://http://ramoslinkramoslink.info/.info/
3rd Annual Western Regional3rd Annual Western Regional
International Health ConferenceInternational Health Conference
"Politics, Social Justice and Global Health" 2005"Politics, Social Justice and Global Health" 2005
Huge Global Disparities in TwoHuge Global Disparities in TwoTypes of CancerTypes of Cancer
nn Cervical CancerCervical Cancer
nn Childhood leukemiaChildhood leukemia
nn Success stories in developed world, killers inSuccess stories in developed world, killers indeveloping worlddeveloping world
Childhood ALLChildhood ALL
nn In developed world, 70% of children are nowIn developed world, 70% of children are nowcuredcured
nn In developing world, at least 80% of childrenIn developing world, at least 80% of childrendie, most without treatmentdie, most without treatment
Cervical CancerCervical Cancer
nn 80% of cases in Latin America, sub-Saharan80% of cases in Latin America, sub-SaharanAfrica, South Asia, parts of Oceania & AsiaAfrica, South Asia, parts of Oceania & Asia
nn Almost 290,000 annual deathsAlmost 290,000 annual deaths
nn HPV + system & cultural barriersHPV + system & cultural barriers
nn Prevention possible - public health investmentPrevention possible - public health investmentneededneeded
nn Condom use could prevent cervical cancer +Condom use could prevent cervical cancer +HIVHIV
Confronting Cervical CancerConfronting Cervical Cancer
nn Without detection & early treatment, almostWithout detection & early treatment, almostalways fatalalways fatal
nn HPV infection begins early, cancer developsHPV infection begins early, cancer developsmostly in women age 35+mostly in women age 35+
nn Low-cost screening methods now developed,Low-cost screening methods now developed,vaccine in progressvaccine in progress
nn Alliance for Cervical Cancer PreventionAlliance for Cervical Cancer Prevention
Focus on Selected IssuesFocus on Selected Issues
nn Access to treatmentAccess to treatment
nn Clinical trialsClinical trials
nn BioethicsBioethics
Treatment Must IncludeTreatment Must Include
nn Screening & diagnosisScreening & diagnosis
nn Medical treatmentMedical treatment
nn Practical & supportive care for patient &Practical & supportive care for patient &familyfamily
nn Pain control & palliationPain control & palliation
Treatment Depends on Access toTreatment Depends on Access toMedicinesMedicines
nn Need for affordable medicines criticalNeed for affordable medicines critical
nn Cancer care means drugs to treat disease andCancer care means drugs to treat disease andeffects of therapyeffects of therapy
nn Need to understand role of international tradeNeed to understand role of international tradeagreements & patent lawsagreements & patent lawsnn WTO & TRIPS & regional & national treatiesWTO & TRIPS & regional & national treaties
nn Doha DeclarationDoha Declaration
Who owns my polio vaccine? The people! CouldWho owns my polio vaccine? The people! Couldyou patent the sun?you patent the sun?
Jonas SalkJonas Salk
Drug PricesDrug Prices
nn Pharma claims on drug pricing to supportPharma claims on drug pricing to supportR&D unfoundedR&D unfoundednn Recent research shows more spent on marketingRecent research shows more spent on marketing
nn NIH R&D = US public pays twiceNIH R&D = US public pays twice
nn Pricing issues worldwidePricing issues worldwide
nn Patients in many countries must purchase ownPatients in many countries must purchase owndrugs & supplies even if medical care may bedrugs & supplies even if medical care may beavailableavailable
Cancer Drug Prices ComparedCancer Drug Prices Compared
Drug NameDrug Name PeruPeru USAUSA MSHMSH
Tamoxifen*Tamoxifen* $49.20$49.20 $37.99$37.99 $1.55$1.55
Prednisone*Prednisone* $9.66$9.66 $2.70$2.70 $1.50$1.50
Methotrexate*Methotrexate* $156.66$156.66 $32.99$32.99 $2.67$2.67
DoxorubicinDoxorubicin $13,038.60$13,038.60 $272.09$272.09 $20.00$20.00
CytarabineCytarabine $2,862.34$2,862.34 $45.30$45.30 $4.06$4.06
HeparinHeparin $833.00$833.00 $8.39$8.39 $0.75$0.75
VincristineVincristine $2,986.66$2,986.66 $23.45$23.45 $1.58$1.58
Peru: prices paid by MINSA (Ministerio de Salud) FY 2003USA: average retail price 2004-5MSH (Management Sciences for Health) - supplier listing for non-profit sector*price for 30 tablets
New Drug Case Example: GlivecNew Drug Case Example: Glivec
nn Unique cancer therapy-unique global priceUnique cancer therapy-unique global price
nn Novartis Novartis promised no pt. would be deniedpromised no pt. would be deniedaccess for financial reasonsaccess for financial reasons
nn Cultivated pt. support via PR campaignsCultivated pt. support via PR campaigns
nn Access reality quite differentAccess reality quite different
Global Price of GlivecGlobal Price of Glivec
nn $30,000 USD/yr. for average dose of$30,000 USD/yr. for average dose of400mg/day400mg/day
nn Price per country varies somewhatPrice per country varies somewhat
nn Some pts. need 600 or 800mg dailySome pts. need 600 or 800mg daily
nn Controls disease, does not cureControls disease, does not cure
nn Must take indefinitelyMust take indefinitely
South KoreaSouth Korea
nn Leukemia patients protest price of GlivecLeukemia patients protest price of Glivec
nn Korean Federation of Activists Fighting for Health RightsKorean Federation of Activists Fighting for Health Rightsarrested at arrested at Novartis Novartis Korea HQ, February 2003Korea HQ, February 2003nn Accessed at: http://www.base21.org/base21hot/Accessed at: http://www.base21.org/base21hot/gleevecgleevec.html.html
Glivec Donation ProgramGlivec Donation Program
nn GIPAP offers free medicine IF:GIPAP offers free medicine IF:nn Pt. Pt. ““properly diagnosedproperly diagnosed””
nn Not reimbursed or insuredNot reimbursed or insured
nn No generics in-countryNo generics in-country
nn Pt. meets per-country income & tx criteriaPt. meets per-country income & tx criteria
GIPAP InequitiesGIPAP Inequities
nn Diagnostics often unavailableDiagnostics often unavailable
nn Argentina vs. Brazil criteria exampleArgentina vs. Brazil criteria example
nn Prior tx requirementPrior tx requirement
nn Income to qualify:Income to qualify:nn in US, <$43,000/yr.in US, <$43,000/yr.
nn in China , <$250/yr. (lowest 10% bracket)in China , <$250/yr. (lowest 10% bracket)
nn Application process web-based, in EnglishApplication process web-based, in English
Lessons From GIPAPLessons From GIPAP
nn Drug donation programs not the answerDrug donation programs not the answer
nn Complex & costly overheadComplex & costly overhead
nn Discourages local solutionsDiscourages local solutions
nn Sustainability in questionSustainability in question
nn Pending EMR case in IndiaPending EMR case in India
WHO Model List of EssentialWHO Model List of EssentialMedicinesMedicines
nn Excludes drugs for cancer therapy fromExcludes drugs for cancer therapy frompriority listpriority list
nn Oncology drugs now only on complimentaryOncology drugs now only on complimentarylistlist
nn Price is factor in selecting essential drugsPrice is factor in selecting essential drugs
nn 2004 Letter of request from pediatric cancer2004 Letter of request from pediatric cancerspecialists: Ponte specialists: Ponte di Legno di Legno & SIOP& SIOP
Perspective on WHO Role Re:Perspective on WHO Role Re:Drug AccessDrug Access
nn Challenge of PPP influences?Challenge of PPP influences?
nn World Cancer Report (2003) seems apologistWorld Cancer Report (2003) seems apologiston pharma pricingon pharma pricing
nn IARC now transparent & pro-active re: cancerIARC now transparent & pro-active re: cancercauses?causes?
nn WHO 2004 Resolution on cancer prevention &WHO 2004 Resolution on cancer prevention &controlcontrol
Pharma InfluencesPharma Influences
nn Awareness: relation to price of drugsAwareness: relation to price of drugs
nn Physicians & other health professionalsPhysicians & other health professionals
nn Patient groupsPatient groups
nn Ethical dilemmasEthical dilemmas
DTCA Situation & ChallengeDTCA Situation & Challenge
nn Allowed only in US & NZAllowed only in US & NZ
nn Biopharmas Biopharmas try to bypass banstry to bypass bans
nn Role of the Internet & e-mediaRole of the Internet & e-media
nn Learn their strategiesLearn their strategies
Clinical TrialsClinical Trials
nn Outsourced to developing countries to lowerOutsourced to developing countries to lowercosts & possibly reduce oversightcosts & possibly reduce oversight
nn ““tx natx naïïveve”” patients being recruited patients being recruited
nn Need for protectionsNeed for protections
nn Complaints have surfaced re: recent cancerComplaints have surfaced re: recent cancertrials in Argentina, India & other countriestrials in Argentina, India & other countries
Global Clinical TrialsGlobal Clinical Trials
nn Clinical trials have become a worldwideClinical trials have become a worldwidebusinessbusinessnn Example: Example: CenterWatchCenterWatch
Trial Sites Extend to these AreasTrial Sites Extend to these Areas
nn Central & South AmericaCentral & South America
nn Eastern EuropeEastern Europe
nn AfricaAfrica
nn AsiaAsia
Declaration of HelsinkiDeclaration of Helsinki
nn World Medical Association decree of 1964World Medical Association decree of 1964
nn Paragraph 30 upholds right of researchParagraph 30 upholds right of researchsubjects to receive continuing health caresubjects to receive continuing health care
nn WMA currently upholding & reviewingWMA currently upholding & reviewingParagraph 30Paragraph 30
Little-known Saga of AbbottLittle-known Saga of Abbott’’ssUrokinaseUrokinase
nn Blood clot-buster for cardio, lung, & cancer txBlood clot-buster for cardio, lung, & cancer txnn FDA recall in 1999 re: manufacturing practicesFDA recall in 1999 re: manufacturing practices
dangers and infection risksdangers and infection risksnn Collected from kidneys of deceased neonatesCollected from kidneys of deceased neonates
at one hospital inat one hospital in Cali Cali, Colombia, Colombiann Questions on informed consent of mothersQuestions on informed consent of mothersnn Re-introduced 2002, will end production Sept.Re-introduced 2002, will end production Sept.
2005. Now made from US sources.2005. Now made from US sources.
Stem Cells are Big BusinessStem Cells are Big Business
Value of Cell-based Therapies Market Estimatedto Reach $26.6 billion in 2005, with LargestExpansion in Diseases of Central Nervous
System and Cancer
Source: Research & Markets Feb. 2005http://www.researchandmarkets.com/reports/c10806/
Umbilical Cord Blood Stem CellsUmbilical Cord Blood Stem Cells
nn Hope or hype?Hope or hype?
nn Potential of CBSCT for unrelated BMTsPotential of CBSCT for unrelated BMTs
nn Public vs. private cord blood bankingPublic vs. private cord blood banking
nn Potential for exploitationPotential for exploitation
Cord Blood Banking in Peru?Cord Blood Banking in Peru?
nn Expectant parents of child with leukemiaExpectant parents of child with leukemiarequest advicerequest advice
nn 3 cord blood 3 cord blood ““banksbanks”” in Lima in Lima
nn Reality: not CB banks, but branch offices ofReality: not CB banks, but branch offices offoreign firmsforeign firms
nn Unrelated BMTs not done in Peru, relatedUnrelated BMTs not done in Peru, relatedBMTs quite rareBMTs quite rare
nn So why presence of CB industry?So why presence of CB industry?
Ad for Private Cord BloodAd for Private Cord BloodBanking CompanyBanking Company
n Baby Cord - Banco de CordónUmbilical de Chile
n Hay decisiones que se pueden tomaruna sola vez en la vida. LaConservación del cordón umbilicalimplica una "esperanza de vida" parasu hijo.
n http://www.babycord.cl/
CB Banking Consumer ConcernsCB Banking Consumer Concerns
nn Need for objective, accurate informationNeed for objective, accurate information
nn Position of medical societiesPosition of medical societies
nn Who protects mothers, babies, and recipients?Who protects mothers, babies, and recipients?
nn Politics & profitsPolitics & profits
nn Control of CB program for USA presentlyControl of CB program for USA presentlybeing contestedbeing contested
Work in ProgressWork in Progress
nn UNESCO Declaration on Universal Norms onUNESCO Declaration on Universal Norms onBioethicsBioethics––International Bioethics CommitteeInternational Bioethics Committee& Intergovernmental Bioethics Committee& Intergovernmental Bioethics Committee
nn World Marrow Donor Association WorkingWorld Marrow Donor Association WorkingGroup on EthicsGroup on Ethics
nn National Bioethics entitiesNational Bioethics entities
nn UN Interagency Committee on BioethicsUN Interagency Committee on Bioethics
US Cancer Issues Are GlobalUS Cancer Issues Are GlobalIssues TooIssues Too
nn Cancer disparities are a social justice issueCancer disparities are a social justice issue
nn Everywhere in the world, cancer disparitiesEverywhere in the world, cancer disparitiesmean more suffering & more deathsmean more suffering & more deaths
nn In the USA resources exist; will to make themIn the USA resources exist; will to make themavailable is needed!available is needed!
Cancer Health DisparitiesCancer Health Disparities
““The unequal burden of disease in our society isThe unequal burden of disease in our society isnot just a scientific and medical challenge. Itnot just a scientific and medical challenge. Italso represents a moral and ethical dilemmaalso represents a moral and ethical dilemmafor our Nationfor our Nation””
Making Cancer Health Disparities History,Making Cancer Health Disparities History,Report of the Trans-HHS Cancer health disparities ProgressReport of the Trans-HHS Cancer health disparities Progress
Review Group, March, 2004Review Group, March, 2004
Scope of the ProblemScope of the Problem
nn 1 in 3 non-elderly uninsured = 82 million1 in 3 non-elderly uninsured = 82 million
nn 33% of adults & 36% of children uninsured33% of adults & 36% of children uninsured
nn Worse cancer outcomes due to late diagnosisWorse cancer outcomes due to late diagnosis
nn Sociodemographic inequalities persistSociodemographic inequalities persist
nn Pts. in rural & remote areas fare worstPts. in rural & remote areas fare worst
Examples of DisparitiesExamples of Disparities
nn Prostate cancer 60% higher among African-AmericanProstate cancer 60% higher among African-Americanmen than among whitesmen than among whites
nn Cervical cancer among Latinas & Vietnamese-Am.Cervical cancer among Latinas & Vietnamese-Am.women 2X rate among Angloswomen 2X rate among Anglos
nn Native Americans have poorest survival rate from allNative Americans have poorest survival rate from allcancers than any other group in USAcancers than any other group in USA
nn National Breast & Cervical Cancer Health ProgramNational Breast & Cervical Cancer Health Programonly serves 15-18% of eligible womenonly serves 15-18% of eligible women
nn Uninsured & Medicaid pts. cannot get urgent dentalUninsured & Medicaid pts. cannot get urgent dentalcare mandatory to receive cancer txcare mandatory to receive cancer tx
Care Delayed or Denied for SomeCare Delayed or Denied for SomeCancer Pts. In the USACancer Pts. In the USA
nn Uninsured & those with Medicaid coverageUninsured & those with Medicaid coverageoften face long delays if not denialsoften face long delays if not denials
nn Denials for pts. waiting for public benefitsDenials for pts. waiting for public benefits
nn Denials for children & adults withDenials for children & adults withundocumented immigration statusundocumented immigration status
nn Noncitizens may be wrongly denied coverageNoncitizens may be wrongly denied coverageby Alien Emergency Medicaid Programby Alien Emergency Medicaid Program(AEMP)(AEMP)
AEMP & Cancer in WAAEMP & Cancer in WA
nn Provisions often misunderstoodProvisions often misunderstood––not just fornot just forundocumentedundocumented
nn Care must be provided for conditions orCare must be provided for conditions ordiseases that threaten lifediseases that threaten life
nn Includes tx that will prevent the state ofIncludes tx that will prevent the state ofemergency from recurringemergency from recurring
nn Cancers requiring therapy by surgery, radiation,Cancers requiring therapy by surgery, radiation,and/or chemotherapy may be includedand/or chemotherapy may be included
International Patients Often SeekInternational Patients Often SeekCancer Care in USACancer Care in USA
nn TodayToday’’s information age means more globals information age means more globalawareness of tx possibilitiesawareness of tx possibilities
nn So more pts. & families seek careSo more pts. & families seek care
nn Access impossible for most, even amongAccess impossible for most, even amongtransnational familiestransnational families
nn US entities need to help create local solutionsUS entities need to help create local solutions
Meeting the ChallengeMeeting the Challenge
nn Current piecemeal efforts inadequateCurrent piecemeal efforts inadequate
nn Public & private sectors need to move beyondPublic & private sectors need to move beyondidentifying problems: plan + actionidentifying problems: plan + action
nn Genuine efforts need to be made to offerGenuine efforts need to be made to offerculturally & linguistically appropriate servicesculturally & linguistically appropriate services
nn Go beyond fragmented & divisive cancerGo beyond fragmented & divisive cancersite/disease specific focussite/disease specific focus
Actors In International CancerActors In International CancerControlControl
nn WHO World Health OrganizationWHO World Health Organization
nn International Agency for Research on CancerInternational Agency for Research on Cancer
nn UICC International Union Against CancerUICC International Union Against Cancer
nn National Institutes of Health-USANational Institutes of Health-USA
nn International Network for Cancer TreatmentInternational Network for Cancer Treatmentand Researchand Research
nn World Cancer Research Fund InternationalWorld Cancer Research Fund International
Some US Cancer Venues Some US Cancer Venues withwithGlobalGlobal Focus Focus
nn National Cancer InstituteNational Cancer Institutenn Office of International AffairsOffice of International Affairs
nn NIH Fogarty International CenterNIH Fogarty International Center
nn St. Jude CRH International Outreach ProgramSt. Jude CRH International Outreach Program
nn Action on Smoking & HealthAction on Smoking & Health
WhoWho’’s Who In Pediatrics Who In PediatricOncologyOncology
nn SIOP International Society of PediatricSIOP International Society of PediatricOncologyOncology
nn ICCCPO International Confederation ofICCCPO International Confederation ofChildhood Cancer Parent OrganizationsChildhood Cancer Parent Organizations
nn St. Jude ChildrenSt. Jude Children’’s Research Hospitals Research Hospital
nn NCI NCI PedPed--Onc Onc BranchBranch
Role of Agencies & NGOsRole of Agencies & NGOs
nn Worldwide, most conduct or support researchWorldwide, most conduct or support research
nn Mostly awareness activities, not pt. care orMostly awareness activities, not pt. care orsupportsupport
nn Historical Historical ““Cancer EstablishmentCancer Establishment””
nn Corporate model of charitiesCorporate model of charities
nn Reliance on industry support can impactReliance on industry support can impactagendasagendas
Power of the InternetPower of the Internet
nn Computers & the internet serve as tools to helpComputers & the internet serve as tools to helppatients worldwide get disease & treatmentpatients worldwide get disease & treatmentinformation, and work for better care.information, and work for better care.
Photo from: asiaone.com
Internet as CommunityInternet as CommunityOrganization ToolOrganization Tool
nn Case study: global access to GlivecCase study: global access to Glivec
nn Community members contacted Internet users,Community members contacted Internet users,who translated messages & sought helpwho translated messages & sought help
nn Patient & caregiver e-networks already inPatient & caregiver e-networks already inplace served as conduitsplace served as conduits
nn Patients in wealthy countries had trackedPatients in wealthy countries had trackedGlivec development, got help; some workedGlivec development, got help; some workedfor equityfor equity
Reality Check re: InternetReality Check re: Internet
nn Recognize it as tool, not answerRecognize it as tool, not answer
nn Digital Divide persistsDigital Divide persists
nn Genuine personal global linkages promoteGenuine personal global linkages promotetransparency & local solutionstransparency & local solutions
nn Beware illusions of actionBeware illusions of action
Solving the Cancer CrisisSolving the Cancer Crisis
nn Micro- & macro-level changes neededMicro- & macro-level changes needed
nn Create progressive cancer advocacyCreate progressive cancer advocacyconstituencyconstituency
nn Integrate cancer control into health promotionIntegrate cancer control into health promotion
nn Build prevention focus = dividends on multipleBuild prevention focus = dividends on multiplefrontsfronts
Fresh Approaches to EducationFresh Approaches to Educationand Training Neededand Training Needed
nn Understand sponsorship risksUnderstand sponsorship risks
nn Break dependence onBreak dependence on pharma pharma resources resources
nn CO techniques & training skillsCO techniques & training skills
nn Lessons from the pastLessons from the past
Grassroots Action ExamplesGrassroots Action Examples
nn In WA, activists got cancer restored as covered underIn WA, activists got cancer restored as covered underAEMP, March, 2004AEMP, March, 2004
nn European European peds peds cancer groups cancer groups ““twintwin”” with developing with developingcountries, e.g. Italy-Nicaraguacountries, e.g. Italy-Nicaragua
nn JD RamosJD Ramosnn drug price work in Peru & Philippinesdrug price work in Peru & Philippinesnn contribute content to Spanish childhood cancer websitecontribute content to Spanish childhood cancer websitenn end-of-life care planning in Brazilend-of-life care planning in Brazilnn provide English translations for articles & web sitesprovide English translations for articles & web sitesnn member of patient & professional discussion listsmember of patient & professional discussion lists
Work in ProgressWork in Progress
nn 5/03 - Framework Convention on Tobacco Control5/03 - Framework Convention on Tobacco Controladopted at WHA, ratified, to take effect 27 Feb. 2005adopted at WHA, ratified, to take effect 27 Feb. 2005
nn 9/04 - Declaration by SIOP on right of all children to9/04 - Declaration by SIOP on right of all children tocancer treatmentcancer treatment
nn 12/04 - Canada-Chile Glivec compulsory license case,12/04 - Canada-Chile Glivec compulsory license case,facilitated by Essential Inventionsfacilitated by Essential Inventions
nn 1/05 - Pres. Vicente Fox declares that all Mexican1/05 - Pres. Vicente Fox declares that all Mexicanchildren with cancer will have right to treatment at nochildren with cancer will have right to treatment at nocostcost
nn 5/05 - Cancer will be on WHA agenda for 1st time5/05 - Cancer will be on WHA agenda for 1st time
Get InvolvedGet Involved
nn Health workers, individually & in groups, canHealth workers, individually & in groups, cannn play an important role in cancer policy & practiceplay an important role in cancer policy & practice
nn build global collaborations & trainingbuild global collaborations & trainingopportunitiesopportunities
nn promote culturally & linguistically appropriatepromote culturally & linguistically appropriateservicesservices
nn participate in international cancer programsparticipate in international cancer programs