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

Personal Motivation forPersonal Motivation forCancer ActivismCancer Activism

Cancer is a CriticalCancer is a CriticalPublic Health IssuePublic Health Issue

Cancer Deaths WorldwideCancer Deaths Worldwide

Global Action Against Cancer, © WHO/UICC 2003

Future Cancer Crisis?Future Cancer Crisis?

Global Action Against Cancer, © WHO/UICC 2003

Causes of CancerCauses of Cancer

Global Action Against Cancer, © WHO/UICC 2003

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

Cancer Awareness Campaign inCancer Awareness Campaign inSouth AfricaSouth Africa

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

BioethicsBioethics

Why do we need to be concerned?Why do we need to be concerned?

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

Medicaid PatchworkMedicaid Patchwork

nn 51 different programs51 different programs

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

The good we secure for ourselves is precariousThe good we secure for ourselves is precariousand uncertain until it is secured for all of usand uncertain until it is secured for all of us

and incorporated into our common life.and incorporated into our common life.

Jane AddamsJane Addams