Advocate

Advocacy means the act or process of supporting a cause or proposal. Advocacy seeks to ensure that all people in society are able to:

• Have their voice heard on issues that are important to them.
• Protect and promote their rights.
• Have their views and wishes genuinely considered when decisions are being made about their lives.

Advocacy works to influence the introduction, enactment, or modification of legislation, for causes related to bladder cancer. Advocacy can occur at the Federal, State, or County level. From time to time, BCAN asks you to raise your voice on behalf of bladder cancer patients and their families. This may entail contacting your legislator, sharing your bladder cancer experience and asking him or her to vote a specific way on a bill. BCAN sends alerts through our newsletters and social media as new issues emerge that need the support and voice of the bladder cancer community.

The tabs below show some of the issues BCAN cares about. Are you willing to you help BCAN advocate on behalf of the bladder cancer community? Maybe you want to visit your representatives in D.C. with us? Perhaps you could write a letter, or send an email? Are you willing to call your representatives?

• Contact Your Representative

  BCAN Advocacy Tips | Contacting your State Representatives

  Federal and State legislators put a lot of weight on what their constituents have to say, especially when they meet with them in their districts.  There is a tremendous opportunity for each of our supporters to take BCAN’s mission to find a cure for bladder cancer, directly to their Federal representatives.

  You can also make a difference by advocating in your state, particularly when there are issues related to medical research or healthcare coverage or services. You can reach out and make your voice and story heard:

  In-Person – at their offices in Washington or within your state district offices

  By phone,  email, or by snail mail.

  How do I find out who my Federal Representatives are?

  Every American is represented in Congress by one Member of Congress and 2 Senators.   Each of these leaders has a webpage that provides their viewpoints on key issues, along with listings of their contact information, and office locations – in Washington and in their districts.

  To find your Senator’s name, you can go to http://www.senate.gov/senators/contact, and from there choose your state, and your list of senators will appear.   This link will also provide you a list of all 100 US Senators.

  To find your Member of Congress, go to www.house.gov/representatives. You can search by State and District or by Last Name near the top of the page.   Or you can enter your zip code to locate your Representative in Congress at the top of the page.

  You can also call the US Capitol Switchboard at 202-224-3121 and ask them to connect you with your Representative.    You may need to provide some additional information such as a zipcode or street address so that your individual Member of Congress can be identified.

  How do I find out where my legislator’s local offices are located?

  Each legislator will have their Washington and state offices listed on their website.   Some Members of Congress will have multiple district offices and all Senators will have multiple district offices.   Senator’s webpages can be found either at www.senate.gov, or in the following format:   SenatorLastName.senate.gov.

  Members of Congress’ page can be found at either www.house.gov, or in the following general format MembersLastName.house.gov.    Often, when two members have the same last name, their full name is used.

  Office locations are often found at the bottom of a legislator’s website or is listed in their “contact” section.  Each listing should provide you with a full address, and a phone number for each specific office.

  For more information – BCAN Advocacy Instructions to Find Your Representatives
• Bladder Cancer Statistics

  According to the American Cancer Society, the death rate from all cancer in the United States has declined steadily over the past 25 years. Lower cancer mortality rates may be due to steady reductions in smoking and advances in early detection and treatment. Yet despite that, bladder cancer remains the 6th most common cancer in the United States, with more than 81,190 new patients expected to be diagnosed in 2022. This number does not include those who will be diagnosed with Upper Tract Urothelial Carcinoma (UTUC), a rarer form of bladder cancer that occurs in the ureters or renal pelvis of the kidney. Sadly,  17,100 individuals will die because of bladder cancer this year. View how many people in your state will be diagnosed this year on our Bladder Cancer by State.

  Whether you live in New Hampshire, the state with the highest incidence rate of bladder cancer (46.5 men per 100,000), or Hawaii, the state with the lowest (23.9 men per 100,000)*, you can learn more and share to raise awareness about bladder cancer in your state.

• Our Legislative Priorities

  The Bladder Cancer Advocacy Network helps serve as a voice for those impacted by bladder cancer.  Since 2005, we have been strong advocates for our community. Our 2022 legislative priorities include:

  Increase federal research funding for bladder cancer

  BCAN supports efforts to increase the budget of the NIH and the National Cancer Institute as well as efforts to prioritize bladder cancer which is #6 is diagnosis but in the mid-20s in Federal funding.

  BCAN is working to establish a permanent $8M annual funding designation within the Congressionally Directed Medical Research Program, building on the over $20M in new bladder cancer research funding previously dedicated.

  Ensure that pre-existing conditions continue to be covered by insurance without new increases in cost or limits

  BCAN will fight to ensure that pre-existing conditions continue to be covered, regardless of the direction Congress moves with any new or improved Federal healthcare legislation.   We support the Affordable Care Act and its coverages and will fight to ensure any additional legislation, including a Medicare for all option, as well as an ACA expansion, preserves this fundamental coverage.

  Eliminate surprise billing including unreasonable out of network charges

  BCAN will fight to eliminate surprise medical billing and provide greater transparency for patients.   We take no stance on subset issues such as geographic median costs or neutral arbitrator decisions and encourage Congress to act this year, ahead of the deadline.

  Access to Care

  BCAN fights to ensure that all Americans, regardless of income, geographic location, age, pre-existing condition, or any other criteria, can access affordable, high quality healthcare.  We support an increase delivery of healthcare systems in rural areas, use of telemedicine,  as well as a patient’s right to choose their own doctor.

  Increase the Supply and Availability of BCG

  BCAN supports continued cooperation between the Federal government (FDA) and our nation’s sole producer of BCG to immediately increase the supply of BCG for bladder cancer patients.

  Prescription Drug Costs

  BCAN supports continued negotiation and limits to the costs of life saving medications.  We take no stand on the mechanism to reduce costs but insist that cost controls part of any major healthcare legislation considered by Congress.

  E-Cigs and Vaping

  BCAN supports federal efforts to curtail the availability and variety of E-Cig and Vaping, especially when it comes to targeted advertising and flavoring for minors.

  Drug Parity

  BCAN supports Congressional efforts to bring about drug parity so that costs can be normalized and controlled regardless of the means by which a drug is administered.

  Save the Social Safety Net

  BCAN opposes cuts to Medicare, Social Security, and other social safety nets.

  Reduce Insurance Barriers to Treatment

  BCAN supports efforts to reduce the myriad of insurance barriers that get in the way of patient care including drug parity, reduced out of pocket expenses, surprise billing, and enhanced coverage.

  Increase Awareness of Bladder Cancer

  BCAN continues to work to increase bladder cancer awareness in both the public and the federal government to ensure that bladder cancer patients can receive the priority they deserve in treatment, research, and care.

  Opioids

  BCAN supports efforts currently underway to address the nationwide abuse of opioids including holding those responsible for the crisis accountable.

  Better Medical Records and Communication

  BCAN supports efforts currently underway to protect patient’s medical information as well as those that modernize the nation’s healthcare delivery system.

• Common Bladder Cancer Advocacy Terms

  Guide to Common Bladder Cancer Advocacy Terms

  Affordable Care Act (ACA or Obamacare): Legislation that provides expanded insurance coverage.
  American Urological Association: Founded in 1902, the AUA is a premier urologic association, providing invaluable support to the urologic community. Our mission is to promote the highest standards of urological clinical care through education, research and the formulation of health care policy.
  Bacille Calmette-Guérin (BCG) has been the gold standard of care for many patients with non-muscle invasive bladder cancer for decades. As a result of many factors, including increased usage, production and shipping difficulties, regulatory burdens and the shutdown of capacity, there is a critical shortage of BCG available in the United States to treat bladder cancer patients.
  Congressionally Directed Medical Research Programs (CDMRP): The CDMRP is a Department of Defense (DOD) program that receives congressional appropriations explicitly for biomedical research in specific, congressionally identified health matters. As such, it is not part of the President’s budget request for the DOD. The U.S. Army Medical Research and Development Command (USAMRDC) administers the CDMRP and is responsible for awarding and managing competitive grants.
  Defense Health Research Consortium (DHRC): A membership organization for advocacy groups to ensure research funding through the Department of Defense grants. Financial Toxicity: The idea that the costs of treating cancer can be so severe they impact upon a patient’s quality of life, becoming an adverse effect themselves.
  Food and Drug Administration (FDA): Oversees all drug and device development in the U.S. Offers many resources and panels for patients and other key stakeholders
  HIPAA: HIPAA is the federal Health Insurance Portability and Accountability Act of 1996. The primary goal of the law is to make it easier for people to keep health insurance, protect the confidentiality and security of healthcare information and help the healthcare industry control administrative costs.
  One Voice Against Cancer (OVAC): A network of cancer advocacy groups dedicated to increasing appropriations for cancer research through NIH, NCI, DOD, and CDC.
  PCORI (Patient-Centered Outcomes Research Institute): An independent nonprofit, nongovernmental organization located in Washington, DC, whose mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make informed health decisions. Authorized by Congress in 2010 as part of a modification to the Social Security Act by clauses in the Patient Protection and Affordable Care Act (Obamacare), PCORI funds comparative clinical effectiveness research, or CER, and work that will improve the methods used to conduct such studies. PCORI supports the BCAN Patient Survey Network.
  Rally for Medical Research: The purpose of the Rally is to call on our nation’s policymakers to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.
  Veteran’s Health Council: A forum for health organizations working to improve health care for veterans.

  Printable page | BCAN Patient Advocates Glossary_2020

• Top 5 Advocacy Issues

  BCAN One-Pagers on how you can:

  Support Servicemembers Who Have Been Exposed Occupationally While Serving in the US Military

  The Issue:  Over the past twenty years, millions of service members and veterans have been directly exposed to toxic chemicals released from burn pits that were commonly in use at our military bases across the Middle East and Afghanistan.  These burn pits were the primary method of disposal for anything from daily trash and health waste to fuels and ordinance and were present at nearly every base our brave men and women were quartered.   As these items were burned, their toxic components were released into the air and into the lungs of those who were defending our freedom.

  As a result of this service-related exposure, many of our heroes have or will face significant health issues in the coming years.   Until recently, neither the Department of Defense (DoD) nor the Veterans Administration (VA) documented burn pit exposure or had approved any link between this exposure and the diseases our brave service members are facing, including bladder cancer.   Without these direct links of service to ailment,  many veterans have faced significant difficulty in obtaining the high-quality health care that they were promised.

  Protect the Rights of Americans With Pre-Existing Conditions

  The Issue:   On March 23, 2010, the Affordable Care Act (ACA), commonly known as Obamacare, was signed into law. This law represents the single largest regulatory overhaul and expansion of healthcare coverage since the passage of Medicare and Medicaid in 1965. The law came into effect in 2014 and by 2016 had halved the population of uninsured Americans, extending coverage to an estimated 20-24 million Americans.

  Among the significant provisions of the ACA was its guarantee of coverage to all Americans with pre-existing conditions.  Before the ACA, insurance companies could deny coverage or charge significantly higher rates for those Americans who they deemed a higher risk, due to any pre-existing condition.  Protecting this coverage has become a central part of any healthcare discussion in Congress.  BCAN has been supportive of efforts to protect coverage for those with pre-existing conditions.

  Support Increased BCG Production and Ease the Burden on Patients During the Shortage

  The Issue: Bacille Calmette-Guérin (BCG) has been the gold standard of care for many patients with non-muscle invasive bladder cancer for decades.  As a result of many factors, including increased usage, production and shipping difficulties, regulatory burdens, and the shutdown of capacity, there is a critical shortage of BCG available in the United States to treat bladder cancer patients.

  Support Increased Federal Funding for Bladder Cancer Research

  The Issue:  The federal government of the United States is the single largest funder of cancer research in the world.  Public support of research through the National Institutes of Health (NIH) and the National Cancer Institute (NCI) is the foundation of this support.  Public funding is truly the lifeblood of cancer research, and we can trace almost every advance in cancer prevention, detection, and treatment back to research funded by the NIH and NCI.  In FY 2021, the NIH will receive $47 billion in federal funding and its NCI will receive nearly $6.3 billion in funding.

  In addition, the Department of Defense (DoD) funds over $1.4 billion in medical research through the Congressionally Directed Medical Research Program (CDMRP).   Since 2016, BCAN has been proud to work with the CDMRP to establish bladder cancer as a fundable disease within the program. As a direct result of these actions, our community has seen over $20M in new federal bladder cancer research since we first became eligible for the program.

  BCAN has also worked to establish a permanent funding line, within the CDMRP, for bladder cancer and those efforts continue to this day.

  Ensure Affordable Access to Prescription Drugs and Next-Generation Treatments

  The Issue:   The high cost that consumers must pay for the lifesaving medication that they need has become one of the highest priority issues on Capitol Hill.  Over the past decade, along with the tremendous advances in prescription drugs and the development of new treatments, consumers have seen a tremendous increase in the cost they must pay for access to these advances.  This often leaves American consumers to take partial doses or otherwise attempt to stretch out their prescription drug supply as far as possible.   In addition, some of the newest and most promising treatments can come with price tags as big as the promise the treatment holds, a barrier that can be too much for a patient to overcome.

  The high cost of prescription drugs routinely polls as one of the most important issues to the American voter.  As a result, both political parties have advanced their own plans to address this topic.

  For more details | BCAN Top 5 Legislative Priorities 2020 One-Pagers

• 2020 Virtual Advocacy Day Video

  Due to COVID 19, it was necessary for BCAN to vary our annual Hill update to keep everyone safe, and out of Washington DC. We invite you to watch the 2020 Virtual Bladder Cancer Advocacy Day video to learn:

  – How you can raise your voice, without leaving home.

  – What is Happening on the Hill? (September 2020 Update)

  – BCAN Advocacy – Today and in 2021

  – Bladder Cancer Advocacy Network Highlight of Legislative Agenda

  Click below to watch the September 15, 2020 Virtual Advocacy Day video:

  Thank you to the sponsors who provided unrestricted educational grants to support Advocacy Day: EMD Serono/Pfizer partnership, Genentech, and Merck.