Are You Heard By Your United States Senator?

by Brittney Hedges


Senator John McCain, Arizona, was a frequent recipient of letters advocating for Medicare coverage of PET scans for patients with malignancies.   At that time patients with ovarian cancer had to fund their own PET scan or not have a scan.  

Today is a day of remembrance of Senator McCain's service to our country.  I remember his requesting information from the Medicare Beneficiary Services Manager when a patient registry to gather efficacy data was bogged down by red tape.  His letter is dated May 16, 2006, later that month the National Oncologic PET Registry (NOPR) began accruing patients.    This registry gathered sufficient data for PET scan efficacy, in fact 36.5% of patients' anticipated treatment was changed due to results of the scan.

The NOPR closed approximately a year ago,  over 100,000 PET scans were covered under "coverage with evidence development" (CED).  This would not have been possible without the assistance of Senator McCain.  

McCain Letter.jpg

 

 


What You May Not Know About Ovarian Cancer

by Brittney Hedges


Most cases start in the fallopian tubes, not the ovaries, study suggests

     https://medlineplus.gov/news/fullstory_169273.html

By Robert Preidt

Tuesday, October 24, 2017

TUESDAY, Oct. 24, 2017 (HealthDay News) -- In a report that will likely surprise many women, researchers say most cases of ovarian cancer originate in the fallopian tubes, not the ovaries.

"Based on a better understanding of its origins, our study suggests new strategies for the prevention and early detection of ovarian cancer," said senior study author Dr. Douglas Levine. He is director of the division of gynecologic oncology at the Perlmutter Cancer Center, which is part of NYU Langone Health in New York City.

For the study, Levine and his colleagues performed genetic analyses of ovarian cancer cells from 96 patients.

Eggs from the ovaries travel through the fallopian tubes on their way to the uterus. The researchers discovered that ovarian cancer cells have more in common with cells covering the tips of fallopian tubes (tubal cells) than with those on the surface of ovaries.

"We found no differences in the 20,000 genes that we can identify. This leads us to believe that these ovarian cancers all originate in the fallopian tubes," Levine said.

The good news is that if markers for these tubal cells can be found, then blood tests, advanced Pap smears, or direct tests on tubal tissue might spot ovarian cancer earlier, the study authors said.

It might also turn out to be feasible to remove a woman's fallopian tubes, but not her ovaries, to reduce the risk of ovarian cancer in those at high risk for the disease, the study authors suggested.

The report was published online Oct. 17 in the journal Nature Communications.

Ovarian cancer is difficult to diagnose in its earliest -- and most treatable -- stages. Fewer than 50 percent of women diagnosed with the disease survive more than five years after diagnosis, according to the American Cancer Society.

SOURCE: NYU Langone Health, news release, Oct. 17, 2017

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News stories are written and provided by HealthDay and do not reflect federal policy, the views of MedlinePlus, the National Library of Medicine, the National Institutes of Health, or the U.S. Department of Health and Human Services.

Recent Health News


National Cancer Institute Patient Advocate Steering Committee Meeting

by Brittney Hedges


In late October, 2017, Patient Advocates serving on various National Cancer Institute (NCI) committees and Task Forces participated in the Patient Advocate Steering Committee (PASC) to network, learn how to become more effective patient advocates and overcome barriers in research. Several ovarian cancer survivors were in attendance, including:

·       Peg Ford and Susan Leighton serving on the Ovarian Cancer Task Force.

·       Dawn Provenzale and Annie Ellis serving on the Gynecologic Cancer Steering Committee (GCSC).

·       Laurel J Pracht, West Valley Ovarian Cancer Alliance Pres., serving on the Symptom Management and Health-Related Quality of Life Steering Committee (SxQOL).

·       Mary Jackson-Scroggins serving on the Investigational Drug Steering Committee (IND).

For more information on the various committees:

PASC
https://www.cancer.gov/about-nci/organization/ccct/steering-committees/patient-advocate

GCSC
https://www.cancer.gov/about-nci/organization/ccct/steering-committees/nctn/gynecologic

SxQOL
https://www.cancer.gov/about-nci/organization/ccct/steering-committees/ncorp/symptom-managementIND
https://www.cancer.gov/about-nci/organization/ccct/steering-committees/investigational-drug

For more information about patient advocate engagement with NCI, please see the NCI Office of Advocacy Relations: https://www.cancer.gov/about-nci/organization/oar

For more information about research advocacy at NCI, please see: https://www.cancer.gov/about-nci/organization/oar/research-advocacy

For more information about ovarian cancer research advocacy with OCRFA, please see:  https://ocrfa.org/advocacy/research-advocacy/


The Medicare Beneficiary Experience Represented

by Laurel J Pracht


 Laurel J Pracht, BFAC Member

                                                           Research Patient Advocate

In 2014 the Centers for Medicare and Medicaid Services (CMS) established a structure for the Quality Innovation Network (QIN) dedicated to continue the work of the Quality Improvement Organization (QIO) program dedicated to local quality improvement.  Within the QIN – QIO and National Coordinating Center (NCC) Beneficiary and Family Advisory Councils (BFACs) were established in response to the concerns of persons served by the Medicare program.  Members of the BFAC are not only beneficiaries and / or family members, but represent the lived experiences of CMS patients.  The beneficiary is at the center of our work to help increase awareness of the patient perspective / impact of CMS’ aim of Better Care, Healthier People and Smarter Spending. 

Members of the BFAC reside in many parts of the United States, from Kona, HI to Arlington VA, from small rural towns to cities joined together as beneficiary and family representatives.  Patient wisdom is a “must have” factor toward improving health care for beneficiaries.  Within this role, BFAC members work with the QIN NCC team to advise quality improvement professionals on best approaches to priority areas for improvement.  Advisors rise above disease-specific interest to address patient challenges, like the impact of insufficient communication with patients and their families or the influence of confusion about coverage / cost on patient decision-making.  Highlighting such areas of concern results in improved patient satisfaction and anticipated health outcomes. 

Engagement of all stakeholders from providers to healthcare facilities with the final component being the consumer or beneficiary, via the BFAC, is vital toward raising awareness of what is effective in best approaches towards improving care.  If people do not think an approach will be effective, the BFAC discusses and suggests alternatives with the anticipated result leading to healthier people in our communities while lowering costs to beneficiaries.

As a beneficiary / consumer and BFAC member, the Council’s input is a valued facet toward identifying best practices resulting in improved beneficiary experiences today and in the future.  As a member of this council, advisors consistently put the patient / beneficiary at the center of their work aimed at improving the customer’s experience and overall satisfaction.  Recently several member of this advisory council met in person to discuss approaches toward effectively representing beneficiaries as well as identifying what matters to patients!  Each member represents various disease types as beneficiaries and / or caregivers, however all are dedicated to improving the patient experience.

To learn more please visit the QIO Program website: http://qioprogram.org/about/why-cms-has-qios

The Role of the Quality Innovation Network National Coordinating Center (QIN NCC):    

“The QIN NCC believes that the quality, safety and experience of healthcare in this country can be exceptional. Therefore, our collective action is to provide support to the QIO Program and specifically QIN-QIOs in their use of quality improvement methodologies, evidence-based best practices, and innovative approaches to maximize improvement efforts. We build capacity to improve healthcare and health in the U.S. by providing tools, templates, reports, analysis, technical assistance, coaching, training, information, promising practices, innovative approaches, opportunities for peer-to-peer connections, guidance, and virtual learning venues.

 The QIN NCC is committed to this work so that:

•We, as a nation, can achieve the goals of the Three-Part Aim: enhance patient experience, improve population health, and reduce costs

•All caregivers – professionals and non-professionals, clinicians and social service providers feel cared for themselves and can better meet the demands of caring for us when we are sick and as we age

•We can positively impact and inform health care policy

•Patients, families, and caregivers are active participants in improving healthcare, supported as partners in health, and receive the most effective, safe, timely, and seamless care that our system has the potential to provide

•We can collectively build a health system that supports a healthy population and enables us to age well in our own homes and communities

In Arizona, Laurel J Pracht was selected as a member of the Beneficiary and Family Advisory Council.  She is a research patient advocate on the national level and believes issues important to patients should be prioritized.  This advisory council is the only such council to bring the collective voice of the patient / beneficiary to the forefront.  


Why Should You, or Should You, Have a Life Plan

by Laurel J Pracht


Palliative Care and Hospice Care may become a topic of conversation at some time during our lives.  The American Society of Clinical Oncology (ASCO) has published an Advanced Care Planning Guide that is well organized and is helpful for all persons considering advanced planning.  This guide is written in lay language so one need not be in healthcare to understand it.

A Last Will and Testament or a Living Trust may direct how our assets are distributed, however during our lifetimes, there may be times we will rely upon others to make decisions for us when we are unable to make such decisions.  Please Click Here to review this informative ASCO guide.   Decisions to assure our preferences are honored are very personal, yet they are made knowing we are gifting our loved ones with peace of mind when/if the time comes when they will need to speak for us. 

Please take a little time to read this guide to plan in advance before a serious illness strikes.  Urge your loved ones to do the same.


Laurel J. Pracht, Personal Statement

by Laurel J Pracht


Advisory Panel on Patient Engagement 

“I may have cancer…..  But it doesn’t have me…….” has been my mantra since being diagnosed with Stage III-C ovarian cancer in 1999.  As a previously very healthy person, the world I entered was one of procedures, a foreign language of medical terminology and no easily accessed patient education materials.    I knew of no survivors, only several women who’d had this disease but all were deceased.  I did not make informed healthcare decisions; I followed the directions of my physicians.

 When a PET scan was ordered, considered the “gold standard” for determining response to treatment, I paid for my PET scan, as it was not covered by insurance. I contacted Centers for Medicare and Medicaid (CMS) asking why this procedure wasn’t covered and learned there was no data available about the scan for coverage.  I became a Patient Advocate!  I worked with a group of nuclear medicine researchers and physicians to form the National Oncologic PET Registry (NOPR), resulting in a “coverage-with-evidence-development” study.  More than 87,700 patients received scans through the registry.   Results indicated 36.5% of patients anticipated treatment changed due to the study results.  Many resorted to short-term loans to cover their scans; many died while still making installment payments.

The CMS Director of Coverage and Analysis Group noticed my name on a list of attendees at a meeting and introduced himself to me.  He stated my advocacy was a driving force in CMS working with the private medical community, that I may not realize my advocacy made a difference for thousands of patients.  I was honored to hear his words; one patient speaking up makes a difference! 

My experience as a Patient Advocate since 2005 remains largely unchanged, I represent patients.  I work with two national research groups to promote evidence-based research.  Patients choosing to actively participate in their healthcare decisions feel a greater sense of control.   I believe research should be accessible to patients for making informed healthcare decisions.  I worked with the Society of Nuclear Medicine and Molecular Imaging to create a patient-friendly website that’s easily navigated with information in lay language.  All patients have the right to understand the treatments and procedures they undergo plus receive results of tests in a timely manner.   The patient has a profoundly different perspective from the researcher or physician when discussing healthcare decisions.

As a patient / Patient Advocate, I wholly support the mission and vision of the Patient-Centered Outcomes Research Institute (PCORI).  My goal as a member of the Patient Engagement (PE) Advisory Panel is to work cooperatively with panel members toward meaningful patient-centered research, to make that research available to patients to make informed healthcare decisions.  As that patient, in 1999, if I’d had research and information available for healthcare decisions from reliable sources, I would have felt a greater sense of control of my own healthcare outcome.  Patients faced with life changing medical decisions, need reliable resources to reach out to for unbiased, accurate information.  The informed patient will guide their desired healthcare outcome.