Skip to main content

The Role of Advocacy in Renal Cell Carcinoma

  • Chapter
  • First Online:
Renal Cell Carcinoma

Abstract

In recent years, the medical community has made enormous strides in the development of new treatments for RCC patients, including seven new therapeutic options approved in the last decade and a variety of new surgical techniques and options. The pace of these scientific advances has given the RCC community great optimism for the future. But serious challenges remain, ranging from spiraling health-care costs to significant cuts to federal research funding. In this environment, strong advocacy for the RCC community is a must, paving the way for scientific progress by helping accelerate policy development, raising awareness of key issues, and encouraging synergy between potential partners across sectors in health care. Advocacy joins with research and education as the vital third element in the triangle of progress upon which the RCC community’s recent accomplishments have been built. Advocacy occurs on many levels within the RCC community, ranging from individuals organizing backyard fund-raisers to 501c3 organizations lobbying Congress and celebrity spokespersons endorsing special initiatives. The Kidney Cancer Association (KCA) is the community’s primary advocate, actively engaging industry, government, academia, and others as essential partners in its effort to raise public awareness, build synergies, and galvanize funding support for new scientific discoveries benefitting patients.

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

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. National Cancer Institute Surveillance, Epidemiology and End Results (SEER). Cancer of the kidney and renal pelvis. http://seer.cancer.gov/statfacts. Accessed 20 Jan 2013.

  2. Moy B, Abernethy AP, Peppercorn JM. Core elements of the patient protection and affordable care act and their relevance to the delivery of high-quality cancer care. Am Soc Clin Oncol. 2012. http://www.asco.org/ASCOv2/Education+%26+Training/Educational+Book?&vmview=edbk_detail_view&confID=114&abstractID=192.

  3. Chow WH, Shuch B, Marston Linehan W, Devesa SS. Racial disparity in renal cell carcinoma patient survival according to demographic and clinical characteristics. CANCER. Published online, Nov 12, 2012.

    Google Scholar 

  4. Probstfield JL, Frye RL. Strategies for recruitment and retention of participants in clinical trials. J Am Med Assoc. 2011;306(16):1798–9.

    Article  CAS  Google Scholar 

  5. LaMattina JL. The Impact of Mergers on Pharmaceutical R&D. Nature Reviews: Drug Discovery. 2011;10:559–60.

    CAS  PubMed  Google Scholar 

  6. Gray A, Manasse HR. Shortages of medicines: a complex global challenge. Bull World Health Organ. 2012;90:158.

    Article  PubMed Central  PubMed  Google Scholar 

  7. Keckley PH, Coughlin S. Deloitte 2012 survey of U.S. health care consumers: the performance of the health care system and health care reform.

    Google Scholar 

  8. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108(9 Suppl):23–7.

    Article  PubMed Central  PubMed  Google Scholar 

  9. American Cancer Society. Estimated new cancer cases and deaths by sex for all sites. 2012 www.cancer.org

  10. Patient Centered Primary Care Collaborative. Better to best: value-driving elements of the patient centered medical home and accountable care organizations. Mar, 2011, Washington, D.C. http://www.pcpcc.net/files/better_best_guide_full_2011.pdf.

  11. Walker EP. AMA makes small gain in membership. MedPage Today. June 17

    Google Scholar 

  12. Oncology Nursing Society website. http://www.ons.org. Accessed 29 Jan 2013.

    Google Scholar 

  13. Brennan T, et al. Medical professionalism in the new millennium: a physician charter. Ann Intern Med. 2002;136(3):243–6.

    Article  Google Scholar 

  14. American Medical Association. Declaration of professional responsibility medicine’s social contract with humanity, adopted by the House of Delegates of the American Medical Association, San Francisco, CA on Dec 4, 2001. http://www.ama-assn.org/resources/doc/ethics/decofprofessional.pdf.

  15. Dharamsi S, Ho A, Spadafora S, Woollard R. The physician as health advocate: translating the quest for social responsibility into medical education and practice. Acad Med. 2011;86(9):1108–13.

    Article  PubMed  Google Scholar 

  16. Kidney Cancer Association. We have kidney cancer, 2010 edn. www.kidneycancer.org.

  17. Kidney Cancer Association website, http://www.kidneycancer.org/index.php/rcc-risk-calc. Accessed 15 Jan 2013.

  18. Varmus HE, What impedes cancer research? National Press Club presentation, September 25, 2012. http://benchmarks.cancer.gov/2012/10/harold-varmus-speaks-at-national-press-club/.

  19. Egan L, Leventhal A. NIH funds are critical to mass. economy. Boston Globe, June 1, 2012.

    Google Scholar 

  20. Cunningham PW. NIH director francis collins: medical research at risk. Politico, January 16, 2013.

    Google Scholar 

  21. Salzberg S. Congress is Killing Medical Research. Forbes. 2013(January 14).

    Google Scholar 

  22. Berg P, Weiner R. Federal cancer research funding crisis threatens nation. Michigan Chronicle, April 17, 2012.

    Google Scholar 

  23. American Cancer Society Cancer Action Network. Cancer research: the promise of hope. 2009. http://action.acscan.org/site/DocServer/promise-of-hope-05192009.pdf?docID=3501.

  24. American Recovery and Reinvestment Act (ARRA) 2009, U.S. General Services Administration website, www.gsa.gov.

  25. American Recovery and Reinvestment Act (ARRA) 2009, Section 804. Federal Coordinating Council for Comparative Effectiveness Research. U.S. Agency for Healthcare Research and Quality (AHRQ) website, http://archive.ahrq.gov/funding/arra/arra-comparative-effectiveness-excerpt.html.

  26. Pal SK, Figlin RA. Renal cell carcinoma therapy in 2010: many options with little comparative data. Clin Adv Hematol Oncol. 2010;8(3):191–200.

    PubMed  Google Scholar 

  27. National Cancer Institute Fact Sheet. Cancer fund-raising organizations. http://www.cancer.gov/images/documents/36900d6f-cbeb-4654-9dbf-d3729daa1622/Fs2_8.pdf.

  28. Congressional Budget Office. Res Dev Pharm Ind. October 2006.

    Google Scholar 

  29. Congressional Budget Office. Res Dev Pharm Ind. October 2006.

    Google Scholar 

  30. Meropol NJ, Kris MG, Winer EP. The American society of clinical oncology’s blueprint for transforming clinical and translational cancer research. J Clin Oncol. 2012;30(1):690–1.

    Article  PubMed  Google Scholar 

  31. U.S. National Institutes of Health. Clinical Trials.Gov website. http://www.clinicaltrials.gov/. Accessed 30 Jan 2013.

  32. Zon R, Meropol NJ, Catalano RB, Schilsky RL. American society of clinical oncology statement on minimum standards and exemplary attributes of clinical trial sites. J Clin Oncol. 2008;26(15):2562–7.

    Article  PubMed  Google Scholar 

  33. Drugdevelopment-technology.com. Clinical trial delays: America’s patient recruitment dilemma. http://www.drugdevelopment-technology.com/features/featureclinical-trial-patient-recruitment/. Accessed 19 Jul 2012.

  34. Vera-Badillo FE, et al. Bias in reporting of endpoints of efficacy and toxicity in randomized, clinical trials for women with breast cancer. Ann Oncol 2012. doi:10.1093.

    Google Scholar 

  35. U.S. Food and Drug Administration and Duke University: clinical trials transformation initiative. https://www.ctti-clinicaltrials.org/.

  36. Food and Drug Administration Safety and Innovation Act (FDASIA). U.S. Food and Drug Administration, enacted July 9, 2012.

    Google Scholar 

  37. Grundy P, Fisher ES, Better to best: value-driving elements of the patient centered medical home and accountable care organizations. 2011. http://www.pcpcc.org/sites/default/files/media/better_best_guide_full_2011.pdf.

  38. American Medical Association Medical Student Section and Committee on Legislation and Advocacy (COLA). Medicare and the sustainable growth rate. http://www.ama-assn.org/resources/doc/mss/cola_medicare_pres.pdf.

  39. PricewaterhouseCoopers PwC. Unleashing value: the changing payment landscape for the U.S. Pharmaceutical Industry. May 17, 2012.

    Google Scholar 

  40. American Association for Cancer Research. Debate heats up over comparative effectiveness research. Cancer Policy Monitor, April 2009.

    Google Scholar 

  41. U.S. Department of Health and Human Services. Economic analysis of the causes of drug shortages. October 2011.

    Google Scholar 

  42. National Coalition for Cancer Research: examining the increase in drug shortages. Testimony to the House Committee on Energy and Commerce Health Subcommittee Hearing. September 23, 2011.

    Google Scholar 

  43. National Cancer Institute. Special Report: Causes, Potential Remedies for Drug Shortages. NCI Cancer Bull. October 4, 2011.

    Google Scholar 

  44. Metzger ML, et al. The Impact of Drug Shortages on Children with Cancer – the Example of Mechlorethamine”. New England Journal of Medicine. 2012;367:2461–3.

    Article  CAS  PubMed  Google Scholar 

  45. Moyer CS. Healthy People 2010 misses targets on obesity and health disparities. American Medical News. 2011(Oct. 24).

    Google Scholar 

  46. Preidt R. Black patients with kidney cancer fare worse than whites: study. Medline Plus, Monday, November 12, 2012

    Google Scholar 

  47. Cheville AL, et al. Appropriateness of the treatment of fatigued patients with stage IV cancer. Support Care Cancer. 2013;21(1):229–33.

    Article  PubMed  Google Scholar 

  48. Erikson C, Salsberg E, Forte G, Bruinooge S, Goldstein M. Future supply and demand for oncologists: challenges to assuring access to oncology services. J Oncol Pract. 2007;3:79–86.

    Article  PubMed Central  PubMed  Google Scholar 

  49. Clarke SP, Cheung RB. The nurse shortage: where we stand and where we’re headed. Nurs Manage. 2008;39(3):22–7.

    Article  PubMed  Google Scholar 

  50. Nevidjon B, Rieger P, Murphy CM, Rosenzweig MQ, McCorkle MR, Baileys K. Filling the gap: development of the oncology nurse practitioner workforce. J Oncol Pract. 2010;6(1):2–6.

    Article  PubMed Central  PubMed  Google Scholar 

  51. Nixon R. Seeking Revenue, Postal Service Plans to Deliver More Junk Mail. New York Times. 2012(September 19).

    Google Scholar 

  52. National Center for Charitable Statistics, Business Masterfile. 2012. http://nccs.urban.org/statistics/quickfacts.cfm.

  53. Best RK. Disease politics and medical research funding: three ways advocacy shapes policy. Am Soc Rev. 2012;77(5):780–803.

    Article  Google Scholar 

  54. Kidney Cancer Association. Over two years, kidney cancer association invests more than $1 million in research program activities. News release, 3 Jan 2013.

    Google Scholar 

  55. Kidney Cancer Association. 2012 annual report.

    Google Scholar 

  56. Kidney Cancer Association. Kidney cancer research: developing a new vision for the future. Symposium for young investigators, Sept 7, 2011.

    Google Scholar 

  57. Van Poppel H, Da Pozzo L, Albrecht W, et al. A prospective, randomised EORTC intergroup phase 3 study comparing the oncologic outcome of elective nephron-sparing surgery and radical nephrectomy for low-stage renal cell carcinoma. Eur Urol. 2010;59(4):543–52.

    Article  PubMed  Google Scholar 

  58. National Center for Health Statistics. Use of the Internet for health information, 2009. Data Brief. Number 66, July 2011

    Google Scholar 

  59. Pew Internet and American Life Project, statistics for social media, 2012. http://www.pewinternet.org/.

  60. Internet World Stats. Facebook usage and facebook growth statistics by world geographic regions, 2012. http://www.internetworldstats.com/facebook.htm.

  61. Tam D. Facebook Processes More Than 500 TB of Data Daily. CNET. 2012(August 22).

    Google Scholar 

  62. Bennett S. Twitter was the fastest-growing social network in 2012, says study. MediaBistro, January 28, 2013.

    Google Scholar 

  63. MacLaughlin S, O’Shaughnessy J, Van Diest A. 2011 Online giving report. February: The Blackbaud Index of Online Giving; 2012.

    Google Scholar 

  64. Kidney Cancer Association Facebook page. Accessed 25 Jan 2013.

    Google Scholar 

  65. American Cancer Society. Cancer facts & figures 2011.

    Google Scholar 

  66. American Cancer Society, U.S. Centers for Disease Control and Prevention, National Cancer Institute, and North American Association of Central Cancer Registries. Annual report to the nation on the status of cancer 1975–2009. J Natl Cancer Inst. 2013;105(3):175–201.

    Article  Google Scholar 

  67. American Society of Clinical Oncology issue brief: comprehensive cancer care improvement act of 2011 (H.R. 3705). www.ascoaction.asco.org.

  68. National Prevention Council, Office of the U.S. Surgeon General. National Prevention Strategy, June 2011.

    Google Scholar 

  69. Pfizer US. Pharmaceuticals. June: The Burden of Cancer in American Adults; 2005.

    Google Scholar 

  70. National Cancer Institute. FY 2011 research funding by cancer type. http://fundedresearch.cancer.gov/search/funded?action=full&fy=PUB2011&type=site.

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to William P. Bro B.S.B. .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2015 Springer Science+Business Media New York

About this chapter

Cite this chapter

Bro, W.P., Larson, P. (2015). The Role of Advocacy in Renal Cell Carcinoma. In: Bukowski, R., Figlin, R., Motzer, R. (eds) Renal Cell Carcinoma. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-1622-1_26

Download citation

  • DOI: https://doi.org/10.1007/978-1-4939-1622-1_26

  • Published:

  • Publisher Name: Springer, New York, NY

  • Print ISBN: 978-1-4939-1621-4

  • Online ISBN: 978-1-4939-1622-1

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics