Skip to main content

Advertisement

Log in

From Individuals to International Policy: Achievements and Ongoing Needs in Diabetes Advocacy

  • Psychosocial Aspects (KK Hood and S Jaser, Section Editors)
  • Published:
Current Diabetes Reports Aims and scope Submit manuscript

Abstract

Diabetes impacts tens of millions of people in the United States of America and 9 % of the worldwide population. Given the public health implications and economic burden of diabetes, the needs of people with diabetes must be addressed through strategic and effective advocacy efforts. Diabetes advocacy aims to increase public awareness about diabetes, raise funds for research and care, influence policy impacting people with diabetes, and promote optimal individual outcomes. We present a framework for diabetes advocacy activities by individuals and at the community, national, and international levels and identify challenges and gaps in current diabetes advocacy. Various groups have organized successful diabetes advocacy campaigns toward these goals, and lessons for further advancing diabetes advocacy can be learned from other health-related populations. Finally, we discuss the role of healthcare providers and mental/behavioral health professionals in advocacy efforts that can benefit their patients and the broader population of people with diabetes.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1

Similar content being viewed by others

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. Glasgow RE, Wagner EH, Kaplan RM, Vinicor F, Smith L, Norman J. If diabetes is a public health problem, why not treat it as one? A population-based approach to chronic illness. Ann Behav Med. 1999;21:159–70.

    Article  CAS  PubMed  Google Scholar 

  2. Albright A. The public health approach to diabetes. Am J Nurs. 2007;107:39–42.

    Article  PubMed  Google Scholar 

  3. Centers for Disease Control and Prevention. National Diabetes Statistics report: Estimates of diabetes and its burden in the United States, 2014. Atlanta, GA: US Department of Health and Human Services. 2014.

  4. Global status report on noncommunicable diseases 2014. Geneva, World Health Organization. 2012.

  5. Valenzuela JM, Seid M, Waitzfelder B, … Mayer-Davis EJ on behalf of the SEARCH for Diabetes in Youth Study Group. Prevalence of and disparities in barriers to care experienced by youth with type 1 diabetes. J Pediatr. 2014;164:1369–1375.

  6. Randall L, Begovic J, Hudson M, … Umpierrez G. Recurrent diabetic ketoacidosis in inner-city minority patients: behavioral, socioeconomic, and psychosocial factors. Diabet Care. 2011;34:1891–1896.

  7. Smith-Spangler CM, Bhattacharya J, Goldhaber-Fiebert JD. Diabetes, its treatment, and catastrophic medical spending in 35 developing countries. Diabetes Care. 2012;35:319–26.

    Article  PubMed Central  PubMed  Google Scholar 

  8. International Diabetes Federation. IDF diabetes atlas update poster. 6th ed. Brussels: International Diabetes Federation; 2014.

    Google Scholar 

  9. American Diabetes Association. Economic costs of diabetes in the U.S. in 2012. Diabetes Care. 2013;36:1033–46.

    Article  PubMed Central  Google Scholar 

  10. American Diabetes Association. Children and adolescents. Sec. 11. In Standards of Medical Care in Diabetes-2015. Diabetes Care. 2015;39(Suppl 1).

  11. Hillson R. Embarrassing diabetes. Pract Diabet. 2014;31:313–4.

    Article  Google Scholar 

  12. Vishwanath A. Negative public perceptions of juvenile diabetics: applying attribution theory to understand the public’s stigmatizing views. Health Commun. 2014;29:516–26.

    Article  PubMed  Google Scholar 

  13. Wolf A, Liu N. The numbers of shame and blame: how stigma affects patients and diabetes management. Diatribe 2014. Accessed from http://diatribe.org/issues/67/learning-curve on March 16 2015. This is an important study demonstrating the substantial stigma experienced by people with all types of diabetes, highlighting the critical need for advocacy.

  14. Browne JL, Ventura A, Mosely K, Speight J. ‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surround type 2 diabetes. BMJ Open. 2013;3:e003384.

    Article  PubMed Central  PubMed  Google Scholar 

  15. Golden SH, Brown A, Cauley JA, … Anton B. Health disparities in endocrine disorders: biological, clinical, and nonclinical factors—an endocrine society scientific statement. J Clin Endocrinol Metab. 2012;97:e1579–e1639.

  16. Turvey J. Kids count in Congress. MLO-Online 2005. Accessed from http://www.mlo-online.com/articles/200508/0805washreport.pdf 17 Mar 2015.

  17. Israel BA, Coombe CM, Cheezum RR, … Burris A. Community-based participatory approach: A capacity-building approach for policy advocacy aimed at eliminating health disparities. Am J Publ Health. 2010;100:2094–2102.

  18. Izumi BT, Schulz AJ, Israel BA, … Sand SL. The one-pager: a practical policy advocacy tool for translating community-based participatory research into action. Prog Commun Health Partnersh. 2010;4:141–147. This is a useful and practical guide to use research for effective advocacy.

  19. Wallerstein N. What is the evidence on effectiveness of empowerment to improve health? Health Evidence Network Report 2006; WHO Regional Office for Europe: Copenhagen.

  20. Wiltshire J, Cronin K, Sarto GE, Brown R. Self-advocacy during the medical encounter: use of health information and racial/ethnic differences. Med Care. 2006;44:100–9.

    Article  PubMed  Google Scholar 

  21. Madrigal DS, Salvatore A, Casillas G, Casillas C, Vera I, Eskenazi B, et al. Health in my community: conducting and evaluating PhotoVoice as a tool to promote environmental health and leadership among Latino/a youth. Prog Commun Health Partnersh. 2014;8:317–29.

    Article  Google Scholar 

  22. Monaghan M, Hilliard ME, Sweenie R, Riekert K. Transition readiness in adolescents and emerging adults with diabetes: the role of patient–provider communication. Curr Diabet Rep. 2013;13:900–8.

    Article  Google Scholar 

  23. Sawicki GS, Lukens-Bull K, Yin X, … Wood D. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ-transition readiness assessment questionnaire. J Pediatr Psychol. 2009;36:160–171.

  24. Palmas W, Findley SE, Mejia M, … Carrasquillo O. Results of the Northern Manhattan community outreach project: a randomized trial studying a community health worker intervention to improve diabetes care in Hispanic adults. Diabet Care. 2014;37:963–969.

  25. Grant C, Pan J. A comparison of five transition programmes for youth with chronic illness in Canada. Child Care Health Dev. 2011;37:815–20.

    Article  CAS  PubMed  Google Scholar 

  26. Necheles JW, Chung EQ, Hawes-Dawson J, … Schuster MA. The teen photovoice project: a pilot study to promote health through advocacy. Prog Commun Health Partnersh. 2007;1:221–229.

  27. Wood FG, Payne-Foster P, Kelly R, Lewis DM. Learning and living diabetes: development of a college diabetes seminar course. Diabet Spectrum. 2011;24:42–6.

    Article  Google Scholar 

  28. Greene MA. Diabetes legal advocacy comes of age. Diabet Spectrum. 2006;19:171–9.

    Article  Google Scholar 

  29. Griffin JW. Employment rights of people with diabetes: changing technology and changing law. J Diabet Sci Technol. 2013;7:345–9.

    Article  Google Scholar 

  30. Graff MR. AADE legislative advocacy: perspectives on prevention. Diabet Educ. 1997;23:241.

    Article  CAS  Google Scholar 

  31. American Diabetes Association. Diabetes advocacy. Sec 14. In standards of medical care in diabetes—2015. Diabetes Care. 2015;38 Suppl 1:S86–7. This is the first time the American Diabetes Association has recognized the importance of advocacy in its Standards of Medical Care, highlighting the growing recognition of advocacy as an integral component of living with diabetes and reflecting the many achievements of national and international organizations to promote advocacy.

    Article  Google Scholar 

  32. Siminerio JM, Dimmick B, Jackson CC, Deeb LC. The crucial role of health care providers in advocating for students with diabetes. Clin Diabet. 2012;30:34–7.

    Article  Google Scholar 

  33. Wood JM. Protecting the rights of school children with diabetes. J Diabetes Sci Technol. 2013;7:339–44.

    Article  PubMed Central  PubMed  Google Scholar 

  34. Author N. Towards the policy reforms we need to tackle NCDs—an interview with Badara Samb. Diabet Voice. 2011;56:17–9.

    Google Scholar 

  35. Pramod S. Non-governmental organizations (NGO’s) and diabetes: advocacy for support services in resource-poor nations. Endocr Abstr. 2012;29:P519.

    Google Scholar 

  36. Colaguiri R, Short R, Buckley A. The status of national diabetes programmes: a global survey of IDF member associations. Diabetes Res Clin Pract. 2010;87:137–42.

    Article  Google Scholar 

  37. United Nations. Resolution adopted by the General Assembly on 20 December 2006. Accessed from http://daccess-ods.un.org/TMP/9047121.4056015.html 31 Mar 2015.

  38. Siegel K, Venkat Narayan KM. The unite for diabetes campaign: overcoming constraints to find a global policy solution. Glob Health. 2008;4:3.

    Article  Google Scholar 

  39. Mbanya JC. Calling the world to action on diabetes. Diabet Voice. 2011;56:15–6.

    Google Scholar 

  40. Schulz AJ, Israel BA, Zimmerman MA, Checkoway BN. Empowerment as a multi-level construct: perceived control at the individual, organizational, and community levels. Health Educ Res. 1995;10:309–27.

    Article  Google Scholar 

  41. Galer-Unti RA, Tappe MK, Lachenmayr S. Advocacy 101: getting started in health education advocacy. Health Promot Pract. 2004;5:280–8. This resource provides practical strategies for health advocacy.

    Article  PubMed  Google Scholar 

  42. Siminerio LM, AlbaneseO’Neill A, Chiang JL, Hathaway K, Jackson CC, Weissberg-Benchell J, Wright JL, Yatvin AL, Deeb LC. Care of young children with diabetes in the child care setting: a position statement of the American Diabetes Association. 2014;37:2834–2842.

  43. National Diabetes Education Program. Helping the student with diabetes succeed: a guide for school personnel. 2010. Accessed from http://www.ndep.nih.gov/media/NDEP61_SchoolGuide_4c_508.pdf 16 Mar 2015.

  44. California Supreme Court Ruling Supports Access to Insulin for California Students. Accessed from http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/access-to-insulin-for-california-students-deprived.html 16 Mar 2015.

  45. Nightscout. 2015. Accessed from http://www.nightscout.info/ 16 Mar 2015.

  46. CGM in the Cloud Facebook group. Accessed from https://www.facebook.com/groups/cgminthecloud/ 16 Mar 2015.

  47. Linebaugh K. Citizen hackers tinker with medical devices. Wall Street J. 2014. Accessed from http://www.wsj.com/articles/citizen-hackers-concoct-upgrades-for-medical-devices-1411762843 31 Mar 2015.

  48. Riordan A. Open source and the cloud: changing the lives of people with type 1 diabetes. Microsoft News 2014. Accessed from http://news.microsoft.com/features/open-source-and-the-cloud-changing-the-lives-of-people-with-type-1-diabetes/ 31 Mar 2015.

  49. Leibrand S. How and why we are working with the FDA. 2014. Accessed from http://diyps.org/2014/10/12/how-and-why-we-are-working-with-the-fda-background-and-a-brief-summary-of-the-recent-meeting-with-the-fda-about-the-nightscout-project/ 31 Mar 2015.

  50. US Food and Drug Administration. FDA approval of Dexcom Share. 2015. Accessed from http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm431385.htm 31 Mar 2015.

  51. JDRF. Children’s Congress. Accessed from http://cc.jdrf.org/about-jdrf-childrens-congress/ 26 Mar 2015.

  52. PLAID. Accessed from http://theplaidjournal.com/index.php/CoM/index 26 Mar 2015.

  53. Gale EAM. Dying of diabetes. Lancet. 2006;368:1626–8.

    Article  PubMed  Google Scholar 

  54. Beran D, Yudkin JS, de Courten M. Access to care for patients with insulin-requiring diabetes in developing countries: case studies of Mozambique and Zambia. Diabetes Care. 2005;28:2136–40.

    Article  PubMed  Google Scholar 

  55. IDF. Life for a child. Accessed from http://www.idf.org/lifeforachild/the-programme 31 Mar 2015.

  56. P4DC. Spare a rose. Accessed from http://www.p4dc.com/spare-a-rose/faq/ 31 Mar 2015.

  57. Kern R. Blood glucose meter accuracy problems acknowledged by FDA, industry, and clinicians. The Gray Sheet. 2013. Accessed from https://www.pharmamedtechbi.com/publications/the-gray-sheet/%2039/21/blood-glucose-meter-accuracy-problems-acknowledged-by-fda-industry-and-clinicians 15 May 2015.

  58. Strip Safely. About the StripSafely collaboration. Accessed from http://www.stripsafely.com/49-2/ 15 May 2015.

  59. Strip Safely. 556, Thanks—congratulations DOC! Accessed from http://www.stripsafely.com/556-thanks-congratulations-doc/ 15 May 2015.

  60. diaTribe. FDA hosts the first live patient chat on diabetes and glucose monitoring devices; how you can influence FDA guidelines. Accessed from http://diatribe.org/issues/63/new-now-next/4 15 May 2015.

  61. FDA. FDA–patient dialogue on the unmet needs in diabetes. Accessed from http://www.fda.gov/downloads/ForPatients/Illness/Diabetes/UCM427478.pdf 15 May 2015.

  62. Parker-Pope T. Diabetes: underrated, insidious and deadly. New York Times 2008. Accessed from http://www.nytimes.com/2008/07/01/health/01well.html 31 Mar 2015.

  63. Institute of Medicine (US) Forum on Drug Discovery, Development and Translation. Transforming clinical research in the united state: challenges and opportunities: workshop summary. 2010. Accessed from http://www.ncbi.nlm.nih.gov/books/NBK50888/ 31 March 2015.

  64. Manganiello M, Anderson M. Back to basics: HIV/AIDS advocacy as a model for catalyzing change. Accessed from http://hcmstrategists.com/wp-content/themes/hcmstrategists/docs/Back2Basics_HIV_AIDSAdvocacy.pdf 31 Mar 2015.

  65. Bazell R. HER-2: the making of herceptin, a revolutionary treatment for breast cancer. 1998: Random House.

  66. Collyar D. How have patient advocates in the United State benefited cancer research? Nat Rev Cancer. 2005;5:73–8.

    Article  CAS  PubMed  Google Scholar 

  67. Manganiello M. What has been accomplished by other patients (and how). Orlando: MasterLab; 2014.

    Google Scholar 

  68. Johnson JA, Edwards AL. Evidence and advocacy: are all things considered? Can Med Assoc J. 2006;174:1856–7.

    Article  Google Scholar 

  69. Trickett EJ, Beehler S, Deutsch C, … Trimble JE. Advancing the science of community-level interventions. Am J Public Health. 2011;101:1410–1419.

  70. Varkey P, Reller MK, Resar RK. Basics of quality improvement in health care. Mayo Clin Proc. 2007;82:735–9.

    Article  PubMed  Google Scholar 

  71. Arent S. The role of diabetes healthcare professionals in diabetes discrimination issues at work and school. Diabet Educ. 2002;28:1021–7.

  72. Schwartz L. Is there an advocate in the house? The role of health care professionals in patient advocacy. J Med Ethics. 2002;28:37–40.

  73. Lorber D, Gavlak G. Stopping diabetes through advocacy: the role of health care professionals. Clin Diabet. 2012;30:179–82. This important paper provides concrete examples of how healthcare professionals can and should become advocates for their patients and for the greater diabetes community.

    Article  Google Scholar 

  74. Saxe JS. Promoting healthy lifestyles and decreasing childhood obesity: increasing physician effectiveness through advocacy. Ann Fam Med. 2011;9:546–8.

    Article  PubMed Central  PubMed  Google Scholar 

  75. Ducat L, Philipson LH, Anderson BJ. The mental health comorbidities of diabetes. J Am Med Assoc. 2014;312:1–2.

  76. Ducat L, Rubenstein A, Philipson LH, Anderson BJ. A review of the mental health issues of diabetes conference. Diabetes Care. 2015;38:333–8.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The work of Marisa E. Hilliard, Ph.D., and Barbara J. Anderson, Ph.D., on this paper was supported by the NIH (K12 DK 097696, PI: B. Anderson) and in part by The Leona M. and Harry B. Helmsley Charitable Trust. Dr. Anderson is also supported by JDRF and NIH (R01 DK 095273). Korey K. Hood, Ph.D., is supported by grants from The Leona M. and Harry B. Helmsley Charitable Trust and NIH (R01 DK 901470, DP3 DK 104059). Sean Oser, M.D., is supported by the NIH (DP3 DK 104054).

Compliance with Ethics Guidelines

Conflict of Interest

Marisa E. Hilliard, Sean M. Oser, Kelly Close, Nancy Liu, Korey K. Hood, and Barbara J. Anderson declare that they have no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Marisa E. Hilliard.

Additional information

This article is part of the Topical Collection on Psychosocial Aspects

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Hilliard, M.E., Oser, S.M., Close, K.L. et al. From Individuals to International Policy: Achievements and Ongoing Needs in Diabetes Advocacy. Curr Diab Rep 15, 59 (2015). https://doi.org/10.1007/s11892-015-0636-z

Download citation

  • Published:

  • DOI: https://doi.org/10.1007/s11892-015-0636-z

Keywords

Navigation