Category Archives: Public Policy

Long Distances To Treatment Centers May Be An Obstacle For Some Women Seeking Breast Reconstruction Following A Mastectomy

breast_cancer06142HealthDay (1/7, Dallas) reports that research indicates “long distances to treatment centers are a significant obstacle for some women seeking breast reconstruction after a mastectomy.” The study authors wrote, “While greater patient awareness and insurance coverage have contributed to greater breast reconstruction rates in the United States, geographic barriers to access this service remain, particularly to academic centers.” The research was published in Plastic and Reconstructive Surgery (abstract below).

Background: Inadequate access to breast reconstruction was a motivating factor underlying passage of the Women’s Health and Cancer Rights Act. It remains unclear whether all patients interested in breast reconstruction undergo this procedure. The aim of this study was to determine whether geographic disparities are present that limit the rate and method of postmastectomy reconstruction.

Methods: Travel distance in miles between the patient’s residence and the hospital reporting the case was used as a quantitative measure of geographic disparities. The American College of Surgeons National Cancer Database was queried for mastectomy with or without reconstruction performed from 1998 to 2011. Reconstructive procedures were categorized as implant or autologous techniques. Standard statistical tests including linear regression were performed.

Results: Patients who underwent breast reconstruction had to travel farther than those who had mastectomy alone (p < 0.01). A linear correlation was demonstrated between travel distance and reconstruction rates (p < 0.01). The mean distances traveled by patients who underwent reconstruction at community, comprehensive community, or academic programs were 10.3, 19.9, and 26.2 miles, respectively (p < 0.01). Reconstruction rates were significantly greater at academic programs. Patients traveled farther to undergo autologous compared with prosthetic reconstruction.

Conclusions: Although greater patient awareness and insurance coverage have contributed to increased breast reconstruction rates in the United States, the presence of geographic barriers suggests an unmet need. Academic programs have the greatest reconstruction rates, but are located farther from patients’ residences. Increasing the number of plastics surgeons, especially in community centers, would be one method of addressing this inequality.

Kimberly Jewett Consulting, Inc. Hires Veteran Advocate

Beth Fairchild Brings Years of Experience to Patient Advocacy

SAN ANTONIO, TX – December 8, 2015 – Kimberly Jewett Consulting, Inc., a leader in patient advocacy for life sciences markets, is pleased to announce the addition of Virginia “Beth” Fairchild to their team during the 2015 San Antonio Breast Cancer Symposium.

Beth, a seasoned professional, will hit the ground running as she brings several years worth of hands-on client and management expertise, backed by her personal experience as a metastatic breast cancer survivor and passionate patient advocate. Her qualifications include a successful track record in healthcare marketing and sales, and her extensive experience in specifically, metastatic breast cancer with a comprehensive understanding of this sophisticated arena.

As an associate, Beth will be contributing to the growth of the organization by concentrating on enrichment of client satisfaction. In her new role, Beth will act as a conduit to clients when she designs and implements new strategies, and as a liaison to new opportunity development – translating client needs into viable product enhancements and solutions.

When asked about her new role with KJC, Beth replied, “I joined Kimberly Jewett, Inc. because I wanted to be part of a team actively involved in driving patient needs and public understanding of this disease. One hundred and twenty-three women and men will die today from METAstatic Breast Cancer, and one day I will be one of those 123. I look forward to working Kim and moving forward with the pharmaceutical industry to build pharma/patient relationships and to create support and advocacy programming.”

CEO and Founder, Kimberly Jewett adds, “We are excited, honored, and grateful to have Beth join our team, supporting the needs of our clients. Our passion, combined with our purpose and professional skillset, will truly impact the lives of cancer patients and their families, and we are both blessed to have the opportunity to be that voice. While honoring the patients who are fighting, surviving, and thriving every day of their fight, and remembering the ones who lost their lives way too soon. Together, WE CAN make a difference in the lives of cancer patients and their families. People just like US.”

FDA “Stepping Up Its Plans” To Regulate Laboratory-Developed Tests

This will have significant implications for patients who have tests performed by companies/laboratories that bring to market to their own tests they have validated and market for clinical testing. FDA, while it has always reserve the right to do so, has largely not regulated laboratory-developed tests.  This appears to be changing with some support by clinical organizations. Further discussions with the FDA, companies, laboratories and clinical diagnostics organizations are going to be required to balance patient safety, quality assurance and access for patients to important tests that are coming to market.

Stat (11/18, Fong) reports in continuing coverage that the Food and Drug Administration “is stepping up its plans to regulate all medical laboratory testing,” as a report released by the agency this week found 20 examples of laboratory-developed tests that may have harmed patients. Dr. Peter Lurie, FDA associate commissioner for public health strategy, said in a blog post, “FDA oversight would help ensure that tests are supported by rigorous evidence, that patients and health care providers can have confidence in the test results, and that LDTs have more scientifically accurate product labeling.”

Modern Healthcare (11/18, Dickson) reports that Lurie also said, “These tests may suggest that a patient doesn’t have a disease or condition, when in fact they do.” Dr. Patrick Conway, the chief medical officer of the Center for Medicaid and Medicare Services, the agency that currently has jurisdiction over the lab-developed tests, said, “The CMS does not have a scientific staff capable of determining whether a test is difficult to successfully carry out or likely to prove detrimental to a patient if carried out improperly.” Medical societies, including the American Society of Clinical Oncology, support FDA regulation of lab-developed tests. Fortune (11/18) and The Scientist (11/18, Vence) also covered the story.

Protesting for Metastatic Breast Cancer Research

It is estimated that 150,000-250,000, Women & Men in the U.S. are living with Metastatic Breast Cancer.  1430 people die every single day from MBC. 24% of these people are alive 5 years from Diagnosis. AND, only 7% of $15-BILLION dollars from 2000-2013, by the major government and non-profit funders in the US and the UK was spent on Metastatic focused Research. This is unacceptable, and change needs to happen.

I met an amazing woman, Beth Caldwell, who is one of the leaders of this MetUp Protest. Beth, is a young mother, metastatic breast cancer thriver, and passionate advocate. Beth, explains life as a MBC patient, the lack of funding & awareness it receives, and what we intend to do to change it. Tomorrow is one step of this process. You can see her video here: http://bit.ly/1N9a7KT and her Huffington Post article here: http://huff.to/1Ii99IL

METUP is a diverse, non-partisan group committed to direct action for a viable cure for breast cancer. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.

Legislative Goals

    1. We want the SEER database modified to begin tracking when someone with early stage disease metastasizes, so that every woman and man with metastatic disease is counted.
    2. We want additional research funding for all cancer types. The National Institute of Health (NIH) now only funds about 8% of the grant applications it receives. We want that number increased to at least 25%.
    3. We want at least 30% of federal breast cancer research dollars to be spent on metastatic disease, with a focus on translational research.

Today, I will be joining over 220 Women & Men, to advocate that more funding for breast cancer gets allocated for Metastatic Research. This protest, AKA “DIE-IN” will take place on the West Lawn of Capital Hill, in Washington, D.C. We will make our voices heard, our bodies seen, and our passion for this change to happen. We will also be meeting with legislators to ask for their support.

I am honored to be here today, representing the many lives of women and men who have passed way too soon. And, to be that voice — advocating for change.

More to come soon!

My Visit on Capitol Hill — Bipartisan Bill to Improve Cancer Care

kjdc2Today, I flew to Washington, DC., to attend the Press Conference and meet with Congressman Randall M. Hultgren, for the Planning Actively for Cancer Treatment (PACT) Act bill (H.R. 2846) which would significantly improve the quality of care for Medicare patients with cancer. This bill is the top policy priority for National Coalition for Cancer Survivorship, and has the potential to make a real difference in cancer care. Congresswoman Lois Capps (D-CA) and Congressman Charles Boustany, Jr., M.D., (R-LA) introduced the bill and are very passionate and hopeful that we can move it through. For more information on the PACT Act, please go to: www.cancerplanact.org

Experts say most cancer patients currently do not receive a written plan that explains their diagnosis, prognosis, treatments, and expected symptoms, leaving them to navigate the complexities of a cancer diagnosis without clear direction or knowing what to expect from their care. This can affect the physical and emotional well-being of patients, as well as increase costs due to fragmented care.

“This year, more than 1.6 million Americans will be diagnosed with cancer, beginning what is most often an extremely intimidating journey,” Congresswoman Capps said. “Although many of these cancer patients and survivors will receive the best care our health care system has to offer, gaps still exist. The PACT Act would fill in those gaps by bringing the care team and patient together to develop a roadmap for the individual’s cancer care, from diagnosis through survivorship.”

Congressman Boustany said, “As a physician who treated life-threatening diseases, I know just how frightening a diagnosis can be for patients. It takes teamwork between doctors and patients to ensure the patient receives the best possible care positioning them for a successful outcome. The PACT Act is a smart approach that ensures cancer patients receive a clear and thoughtful roadmap taking them from diagnosis to remission and beyond.”

Cancer has a major impact on Medicare beneficiaries. The majority of cancer diagnoses occur in individuals 65 years and older, and the majority of cancer survivors are senior citizens. The PACT Act would establish a new Medicare service for cancer care planning.  The planning service could be provided to patients at the time of cancer diagnosis, at the end of active treatment and beginning of long-term survivorship, and when there is a significant change in treatment.

“The PACT Act has the potential to make a real difference in cancer care in our lifetime,” said NCCS Chief Executive Officer Shelley Fuld Nasso. “Medical providers want to deliver the best care possible, but in order to do that, the patient’s wishes must be clearly understood. By encouraging deliberate discussion and planning before, during and after cancer treatment, we can help make cancer patients—and the health system that cares for them—better.”

See the full press release herehttp://www.canceradvocacy.org/news/bipartisan-bill-to-improve-cancer-care-is-introduced-in-house-by-representatives-capps-and-boustany/

As a two-time breast cancer survivor myself, I can see the tremendous value a Cancer Care Plan can provide patients and their families. This type of care plan would support patients through their cancer care continuum, at the time of diagnosis, at transitions in active treatment, and at the transition from active treatment to long term survivorship. The process would allow a written plan of care — developed between a patient and their health care team, to support patients managing their care.

Currently there are a few care plan options available for use now. ASCO has this template available: http://www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf?et_cid=34653101&et_rid=463566256&linkid=ASCO+Answers+Guide+to+Survivorship, and NCCS has partnered with Journey Forward to offer a PDF version or a FREE mobile app. You can find out more about it here: www.journeyforward.org

If you would like to advocate for this bill to be passed, please reach out to your local representative and ask them to support H.R. 2846.

Be your own best advocate.