Archive for the ‘Clients In The News’ Category

Online Extra: Political Notes: LGBT seniors back call for CA aging master plan

Posted: Oct 15, 2018 | Posted by Kassy Perry | Comments Off on Online Extra: Political Notes: LGBT seniors back call for CA aging master plan

By Matthew S. Bajko
The Bay Area Reporter
October 15, 2018

LGBT senior advocates are backing a campaign calling on California’s next governor to develop a statewide plan addressing the myriad issues confronting the state’s rapidly aging residents.

The SCAN Foundation and West Health, a San Diego-based nonprofit health care provider and advocacy group for seniors, are leading the drive to see state officials create a Master Plan For Aging. Earlier this year they launched the We Stand With Seniors … Will You? campaign to lobby lawmakers and policymakers in the Golden State on the various issues confronting older adults, their caregivers, and families.

About 50 people attended an informational session about the campaign last Thursday morning at the LGBT Community Center in San Francisco. The event was co-sponsored by Openhouse, the LGBT services agency based in the city that helps oversee an affordable housing development aimed at LGBT seniors a block away from the LGBT center.

“We can’t just talk about supporting seniors,” said gay state Senator Scott Wiener (D-San Francisco), “we have to do it.”

Both gubernatorial candidates Democrat Gavin Newsom, the state’s lieutenant governor and a former mayor of San Francisco, and Republican businessman John Cox have pledged their support. Whoever is elected in November will be pressed to follow through on their commitment to create a statewide aging master plan.

“You are going to have a champion if I can win this governor’s race,” said Newsom in a taped message. He agreed that there is a growing “aging and graying population in the state of California that needs to be celebrated, that needs to be invested in, that needs a plan to address the long-term aging needs of this state.”

Added Cox in his own videotaped statement, “Help is on the way. The seniors of this state are the backbone of our society. They deserve nothing less than our best efforts and attention.”

California has the most people age 60 and older of any state in the country with 8.22 million as of 2018. It also has the fastest-growing senior population, with an additional 2.1 million residents expected to turn 65 or older by 2026, according to projections by the state Department of Finance.

A study released in August by the Williams Institute, an LGBT think tank at the UCLA School of Law, found that roughly 3.5 percent of adults in California age 50 and older identify as LGB. The study, using data from the 2015-2016 California Health Interview Survey, found there were 268,800 older adults in the state who identify as lesbian or gay and 163,000 as bisexual. (There is no statewide data for the transgender senior population.)

“We have a growing LGBT senior population,” noted Wiener. “We have not done what we need to to plan for it.”

While the UCLA researchers found that the LGB older adults were as healthy as their straight counterparts, a departure from previous studies, they did discern that bisexuals and Hispanics/Latinos exhibit poorer health and well-being than their lesbian and gay and non-Hispanic peers.

“We really need to hear from the seniors. They need to have a seat at the table,” said Cecilia Chung, a transgender woman who is a health commissioner in San Francisco, at last week’s forum.

CJ Peoples, who attended the event with his dog, Mister, is a single, 64-year-old gay man who lives alone in the city’s TenderNob area between the Tenderloin and Nob Hill neighborhoods.

“The one thing that scares me is being alone when I die,” said Peoples, who is retired. “What is this grand plan going to do for me?”

Roma Guy, a lesbian who formerly served on the city’s health commission and now advocates for prison reform, pointed out that many aging services are only eligible to people 62 or older when the age limit needs to be lowered to 50 or 55 years of age. Many people of color and LGBT people who have experienced discrimination or trauma in their lives confront aging issues earlier than others, noted Guy.

“If we do another strategic plan and the age eligibility for services is 65, those people will not come because they know they are not a part of it,” she said.

The U.S. Administration on Aging requires that the California Department of Aging every four years create a new State Plan on Aging. The latest report, which covers 2017 through 2021, mentions LGBT seniors 11 times within its 104 pages.

“Lifelong fears or experiences of discrimination have caused some of these older adults to remain invisible, preferring to go without much-needed social, health, and mental health services,” states the report.

Noting how difficult it is to accurately count LGBTQI older adults, the report nonetheless estimated there are approximately 380,282 to 760,565 older LGBTQI Californians. And it predicted that, by 2030, that number would nearly double.

The plan promised that the state aging department would “better serve” LGBTQI older adults “through more culturally competent outreach and services.”

A more comprehensive plan, however, is needed that addresses the varied issues seniors in California are struggling with, said Sarah S. Steenhausen, the SCAN Foundation’s senior policy adviser.

“We are hopeful a master plan can start to address these needs but only if it is done comprehensively,” she said at last week’s forum. “Many reports have been written in the past but there has been no action to follow it up. They just sit on shelves.”

Clair Farley, a transgender woman who is the director of San Francisco’s Office of Transgender Initiatives, echoed other panelists at the forum in suggesting the aging master plan be modeled after the report the city’s LGBT Aging Policy Task Force issued four years ago. It was completed within two years and set out a list of policies that city leaders could implement in order to address the needs of San Francisco’s aging LGBT residents.

All but two of the recommendations in the report have since been enacted, with city leaders working to address the remaining suggestions ahead of the five-year anniversary of the report next spring.

State leaders have taken a number of steps already to address the needs of LGBT seniors as well as straight older adults. In 2014 the state Assembly Committee on Aging and Long-Term Care created a one-inch thick report detailing the needs of the state’s minority senior populations, including LGBT older adults.

As the Bay Area Reporter noted in a story — https://www.ebar.com/news//245036 — about the report, called “Faces of Aging,” it did not call for any specific legislation. Instead, it was meant to serve as a resource for lawmakers interested in pursuing bills aimed at addressing senior needs.

Since its release, state lawmakers enacted legislation that went into effect this summer requiring a number of state agencies to collect sexual orientation and gender identity, or SOGI for short, demographic data on the LGBT people they serve. It mirrored local legislation passed by San Francisco leaders that also requires city agencies, as well as providers of aging services funded by the city, to ask SOGI questions of the people they serve.

The state also enacted a law that required continuing medical education curriculum to include a discussion of LGBT-specific issues. More recently, Wiener pushed through a “senior’s bill of rights” for those LGBT people and others living in assisted living facilities to ensure they were not discriminated against due to their being LGBT. Again, it was modeled after a law he helped pass while on the San Francisco Board of Supervisors.

But much more needs to be done, contend senior advocates, particularly to assist those seniors who want to age in place at home. The issues they want to see included in a statewide aging master plan run the gamut from affordable housing and assisting homeless seniors to ensuring access to affordable health care and better pay for home health care workers.

One step Wiener said voters could take to assist seniors and others who are struggling to remain housed is to support Proposition 1, the $4 billion bond for affordable housing on the November ballot.

What is driving the campaign for the comprehensive aging plan is “we really want our seniors to successfully age in place,” said Bill Earley, the chief operating officer and general counsel of West Health who is a member of the California Commission on Aging. “How can we build the coalitions we need to go to Sacramento so the new administration hears us and hears us clearly?”

Because, noted Earley, “senior issues have not been at the forefront of our political debate, with a few exceptions.”

To learn more about the campaign for the master aging plan, visit its website at https://www.westandwithseniors.org/.

10-year-old San Francisco boy finishes 50 5K runs in 50 days for charity

Posted: Oct 15, 2018 | Posted by Kassy Perry | Comments Off on 10-year-old San Francisco boy finishes 50 5K runs in 50 days for charity

By Michael Cabanatuan
San Francisco Chronicle
October 14, 2018

Photo: Michael Short / Special To The Chronicle.

Photo: Michael Short / Special To The Chronicle.

Many 10-year-olds spend their days playing, riding bikes or sneaking as much screen time as possible. Niall McDermott spent part of his past 50 days running.

Sunday at San Francisco’s Crissy Field, Niall completed his 50th 5-kilometer run in 50 days, a challenge he used to raise more than $4,000 to research lung cancer, which his grandfather in Maryland is battling.

Niall has a mild-mannered nature and appearance. He wears glasses with black frames, has a full head of wavy brown hair and speaks in short, direct sentences. He seemed neither awed nor impressed with his accomplishment, spoke very matter-of-factly and smiled politely when people applauded him.

Niall’s 50th run took place as part of Splash and Dash, a combination 2-kilometer bay swim and 5-kilometer run. Niall skipped the swim but joined the race near the Golden Gate Bridge at the Warming Hut, starting out at a trot with a friend. He ran to Fort Point, turned around and ran back to the Wave Organ, then west again, finishing near East Beach.

As he approached the finish line, Niall displayed a burst of speed, ran between two billowing flags and stopped. As a small crowd cheered, Niall raised his right hand in the air slightly and briefly. Several of the run-and-swim athletes gave him fist bumps.

Niall said he was happy to be done with the challenge.

“It was pretty tiring,” he said, “and I was nervous for a lot of it. I thought I wasn’t going to be able to finish.”

The nerves disappeared about halfway through the 50 days, he said, and he was partly inspired by the thought that he might get a trophy for his achievement. He was awarded a gift card to Sports Basement and his dad, Ryan McDermott, said a trophy will be forthcoming.

Maggie McDermott, Niall’s mother, said her son was inspired by a documentary she had him watch about the Iron Cowboy, a Utah man who completed 50 Ironman triathlons in 50 days in 50 states. His mom wasn’t sure Niall would like the video, but when it was done he told her: “I want to run 50 5K’s in 50 days.”

Niall had occasionally run with his dad but not regularly, she said. But the family set out to help him fulfill his challenge.

Ryan found scheduled 5K races, mostly on weekends. Maggie took him to the Polo Field in Golden Gate Park and to Crissy Field, both near their Richmond District home, on weekdays and he would run until his watch told him he had gone 3.1 miles (5 kilometers).

The challenge, Maggie McDermott said, was “completely self-directed,” and his parents supported it but suspected he would tire of the effort, mentally or physically, after 10 or 15 days. They also worried about injuries, but his pediatrician said that he would be OK as long as he didn’t push too hard.

“He’s been feeling great the whole time,” his mother said. “No running type injuries.”

Niall did, however, endure a few bouts of sideaches or stomach cramps, a common malady for runners. He went to see a doctor, who said he was OK and gave him permission to continue his quest.

Once it became clear that Niall was serious about making it to 50 days, the family found a charity — the Bonnie J. Addario Lung Cancer Foundation, based in San Carlos — and set up a website to raise money for the research-funding organization. Niall’s grandfather, John Eng, of Rockville, Md., is fighting the disease.

“It was important to me because my grandfather was diagnosed with lung cancer and I wanted to help,” Niall said. “I think he should be proud of me because I raised $4,000 for cancer research.”

Maggie McDermott said Eng, her father, “is touched and amazed Niall has the gumption to do this. He knows Niall loves him and that this is his way of showing it.”

Bonnie Addario, lung cancer survivor, namesake and founder of the foundation, said in a statement that she was also impressed.

“Niall is an exceptional young man and the money he is raising will help us in our efforts to end lung cancer,” she said.

Niall, in addition to a trophy, was hoping for his favorite food, cheese pizza, and a respite from running. His dad said he was going go-karting Sunday afternoon.

“I’m probably going to take a few days off,” Niall said.

My turn: How the next governor can help aging Californians

Posted: Oct 11, 2018 | Posted by Kassy Perry | Comments Off on My turn: How the next governor can help aging Californians

By Cheryl Brown, Special to CALmatters 
CALmatters
October 11, 2018

California’s next governor will face an issue that has the potential to wreak havoc on the state budget: California is aging. We may not think about it, but every day, 1,000 people turn 65.

The Public Policy Institute of California did the math and found that California’s senior population will increase by nearly 90 percent, or 4 million people, by 2030. That’s only twelve years away. If we are to be even remotely prepared for the expected 4 million new seniors that will need services, we need to start today.

This increase will put more stress on our health care system and long-term care programs.

Let me focus on the long-term care part of the issue. I became very familiar with it during my tenure as the chair of the Assembly Aging and Long-Term Care Committee.

I dedicated countless hours addressing this issue, authoring the resolution that created the California Task Force on Family Caregiving that is now housed at the Leonard Davis School of Gerontology at the University of Southern California.

Here are three issues for the next governor to consider:

  • As the population of low-income older adults swells in the next 15 years, the Medi-Cal budget will explode with increased payments to hospitals, nursing homes and physicians unless the state adopts innovative and cost-effective programs to provide services, like home-based primary care, expanded Denti-Cal and telemedicine.
  • There are nearly 4.5 million unpaid caregivers in California. The next governor must support and professionalize paid and unpaid caregivers because we are witnessing an escalation in generational poverty as family caregivers must opt out of the workforce.
  • The governor must appoint one agency to coordinate aging services and simplify the process so consumers can find services with a single 1-800 number and website. The labyrinth of departments, agencies, programs and regulatory structures across the Health and Human Services Agency creates confusion for consumers and their families and affects access to care.

When we discuss long-term care for seniors, we are not discussing placing people in nursing homes when they need help taking care of themselves. Long-term care is so much more than that. While it is important that California has enough facilities to provide nursing homes—if wanted by the person—it is only part of the equation.

A larger portion of the long-term care discussion involves in-home care services that enable seniors to age in place with dignity and independence. This topic has gained attention as our nation focuses on an invisible workforce: unpaid family caregivers, saving the system some $87 billion dollars.

This topic hits home for me. I have been a caregiver to my older loved ones throughout my life.

At 12 years old, I cared for my maternal grandmother every day after school, relieving my aunts so they could go to work. And that was just the beginning. Since then, I’ve served as a caregiver to my paternal grandmother, my great aunt, my mother and now my husband.

As California’s senior population grows, we are in dire need for more caregivers. What’s more, we will need to find ways to support their efforts and ensure there are services available to assist them.

Enhanced support for caregivers will, in turn, reduce the burden on our healthcare system as our older adults will be able to age in place while utilizing quality support services.

As I can attest, it is not easy work and the hours are long. But without these selfless people, who would care for our moms, grandmas, aunts, and friends? Especially when taking into note California’s massive workforce shortage.

I can’t think of a better way to honor our family caregivers than if our two candidates for governor make this a priority issue in the remaining days of the election.

Once the confetti is swept up from the victory celebration, the challenge of addressing our looming senior care crisis will not fade. It will be front and center, not next week, not next month and not next year, but now.


Cheryl Brown, a former Democratic Assemblywoman from Rialto, is a member of the California Commission on Aging, cheryl4212@gmail.com. She wrote this commentary for CALmatters.

Gubernatorial Candidates #StandWithSeniors and Commit to Developing a Statewide Master Plan on Aging

Posted: Oct 1, 2018 | Posted by Kassy Perry | Comments Off on Gubernatorial Candidates #StandWithSeniors and Commit to Developing a Statewide Master Plan on Aging

(SACRAMENTO) – With 36 days left until the election, both candidates for California governor have committed to addressing the looming senior care crisis and creating a California master plan on aging. Currently, one in five older adults lives in poverty and, in just a decade, the state will see an increase of four million more seniors needing healthcare and support services. The public infrastructure cannot address these needs without significant public policy changes.

Lieutenant Governor Gavin Newsom and businessman John Cox voiced their support and commitment to work on this critical issue should they be elected governor in video messages unveiled at The SCAN Foundation’s “California Summit on Long-Term Services and Supports: Strengthening Voices; Driving Change” conference in Sacramento. Below are excerpts:

“The work you do is so important. The seniors of this state are the backbone of society. They have contributed to the growth and success of the state of California and they deserve nothing less than our full attention and our best efforts… We need to work together to work on a master plan for aging in the 21st century. We’ve got to make sure that our senior population, as well as all Californians, have the ability to lead an affordable and livable lifestyle.”
–  John Cox, Candidate for Governor

“I want to just express my appreciation to The SCAN Foundation for everything you are doing to raise the bar, the expectation, and awareness around an aging and graying population in the state of California that needs to be celebrated, that needs to be invested in, that needs a plan to address the long-term aging needs of this state… I want to extend to you my commitment – not just my interest – my commitment – to lead that charge.”
–  Lieutenant Governor Gavin Newsom, Candidate for Governor

“Both candidates understand we must more fully and effectively address the serious issues facing California seniors,” said Shelley Lyford, president and CEO of West Health. “We look forward to working with the next governor to turn promises into policies, to spur transformational change for seniors and their families, and to ensure a better future for generations to come.”

“Having bipartisan support on developing a master plan for aging from both California gubernatorial candidates is historic,” said Bruce Chernof, president and CEO of The SCAN Foundation. “Regardless of who wins in November, we have the commitment of the future governor to implement long-term solutions for aging with independence.”


About We Stand With Seniors
West Health and The SCAN Foundation’s We Stand With Seniors… Will You? nonpartisan, public awareness and education campaign focuses on the specific challenges seniors and their families face in accessing high-quality, affordable healthcare, dental care and supportive services and the cost to the state if these challenges are not addressed. Keep up with #StandWithSeniors by visiting www.WeStandWithSeniors.org and following on Facebook @WeStandWithSeniors and Twitter @WeStandWSeniors.

Bonnie J. Addario Lung Cancer Foundation and ALK-Positive Patient Group Partner to Encourage Members to Join Lung Cancer Registry

Posted: Sep 20, 2018 | Posted by Kassy Perry | Comments Off on Bonnie J. Addario Lung Cancer Foundation and ALK-Positive Patient Group Partner to Encourage Members to Join Lung Cancer Registry

(SAN CARLOS, CA)—The Bonnie J. Addario Lung Cancer Foundation (ALCF) is partnering with ALK Positive, an online community of over 1,200 members worldwide dealing with ALK-positive lung cancer, to encourage Lung Cancer Registry membership. ALCF, along with partners, the American Lung Association’s LUNG FORCE and the International Association for the Study of Lung Cancer (IASLC), developed the Lung Cancer Registry to provide researchers and clinicians with a data repository of information on all types of lung cancer, including ALK-positive lung cancer patients, as well as other genetic subpopulations, that they can use to further research.

“The cure for cancer lies within the patient,” said Bonnie J. Addario, 14-year lung cancer survivor and founder of ALCF. “The work that the ALK Positive lung cancer group is doing to advance research for this oncogene, and all lung cancer patients, is critical to creating a paradigm shift. Nearly a quarter million Americans will be diagnosed with lung cancer this year, and this patient-driven resource where patients share their information about living with lung cancer allows scientists and researchers the opportunity to learn from patients firsthand.”

ALK-positive lung cancer is rare, representing only four to seven percent of non-small cell lung cancer cases. Because the number of patients who have this form of lung cancer is relatively small, doctors and researchers have a hard time gathering information about the disease and treatments from the patient perspective. The registry provides a critical path to information about this important subpopulation.

“The Lung Cancer Registry is a game changer,” said Tom Carroll, who co-founded ALK Positive with his wife, Merita, before she died from lung cancer in April 2018. “The registry links patients and their data to doctors and researchers searching for better treatments. We strongly believe patient data provides the key to solving the puzzle of ALK-positive lung cancer. The more patients who take part in the registry, the faster we can move towards a cure.”

ALCF and ALK Positive have partnered to create awareness of and increase participation in ALK-positive lung cancer research – ultimately to advance treatment of the disease. With participation in the registry, patients gain access to aggregated data gathered from the community and can learn about the experiences of other lung cancer patients. Additionally ALCF has provided a registry resource guide for ALK members to reference in community outreach and fundraising. The guide also answers patient and caregiver questions about privacy, including how the organizations will use the collected information.


About ALK Positive 
ALK Positive is an online community where non-small cell lung cancer (NSCLC) patients and caregivers afflicted with the anaplastic lymphoma kinase (ALK) gene mutation/rearrangement can join with like patients to share support, empathy, and information. NSCLC ALK Positive patients make up only about five percent of all lung cancer diagnoses each year. Since its founding as a Facebook support group in 2015, ALK Positive has grown to more than 1,200 members worldwide. For more information about ALK Positive please visit www.alkpositive.org or follow us on Facebook or Twitter.

About the Bonnie J. Addario Lung Cancer Foundation 
The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest international philanthropies (patient-founded, patient-focused and patient-driven) devoted exclusively to eradicating lung cancer through research, early detection, education and treatment. The foundation’s goal is to work with a diverse group of physicians, organizations, industry partners, individuals, patients, survivors and their families to identify solutions and make timely and meaningful change and turn lung cancer into a chronically managed disease. The ALCF was established on March 1, 2006, as a 501c(3) nonprofit organization and has raised more than $30 million for lung cancer research and related programs. The foundation has received four stars from Charity Navigator and has earned the platinum GuideStar nonprofit seal of transparency. For more information about ALCF please visit www.lungcancerfoundation.org or follow us on Facebook or Twitter.

About the International Association for the Study of Lung Cancer
The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated to the study of lung cancer. Founded in 1974, the association’s membership includes more than 6,500 lung cancer specialists in over 100 countries. IASLC members work to enhance the understanding of lung cancer among scientists, members of the medical community and the public. IASLC publishes the Journal of Thoracic Oncology, a valuable resource for medical specialists and scientists who focus on the detection, prevention, diagnosis and treatment of lung cancer. Visit www.iaslc.org for more information and follow us on Twitter @IASLC.         

About the American Lung Association 
The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy. The work of the American Lung Association is focused on four strategic imperatives: to defeat lung cancer; to improve the air we breathe; to reduce the burden of lung disease on individuals and their families; and to eliminate tobacco use and tobacco-related diseases. For more information about the American Lung Association, a holder of the Better Business Bureau Wise Giving Guide Seal, or to support the work it does, call 1-800-LUNGUSA (1-800-586-4872) or visit:  Lung.org.

State and Local Organizations #StandWithSeniors and Urge Gubernatorial Candidates to Participate in Statewide Televised Debate

Posted: Sep 6, 2018 | Posted by Kassy Perry | Comments Off on State and Local Organizations #StandWithSeniors and Urge Gubernatorial Candidates to Participate in Statewide Televised Debate

(SACRAMENTO) – As a fiscal and humanitarian crisis among California’s senior population looms, prominent stakeholders have called on the state’s gubernatorial candidates—businessman John H. Cox and Lieutenant Governor Gavin Newsom—to participate in a debate focused on the issues that impact all Californians. The statewide, televised debate slated for the fall is co-hosted by We Stand With Seniors… Will You? and KGTV ABC10 (San Diego), in partnership with the California Broadcasters Association and The San Diego Union-Tribune.

More than 20 stakeholders and organizations have sent letters urging participation of one or both of the candidates, including the Aging Services Collaborative of Santa Clara, Alzheimer’s Association, California Association of Area Agencies on Aging, California Commission on Aging, California Health Advocates, California Senior Legislature, Choice in Aging, Congress of California Seniors, Justice in Aging, Kern County LTSS Coalition, LeadingAge California, Los Angeles Aging Advocacy Coalition, Orange County Aging Services Collaborative, Santa Barbara County Adult & Aging Network, Senior Coalition of Stanislaus County, Serving Seniors, The Seniors Council of Santa Cruz and San Benito Counties and Yolo Healthy Aging Alliance, with many others in the works.

“Despite California’s rapidly growing aging population—by 2030 nearly one-fifth of the state’s population will be over the age of 65—and the fact that older adults make up more than half of likely voters, seniors have historically, and surprisingly, taken a back seat in state policy discussions and platforms,” said Shelley Lyford, president and chief executive of West Health. “With the support of such prominent organizations, we are that much closer to a time where all Californians are able to age safely and with dignity.

The SCAN Foundation and West Health, senior-focused nonprofits, founded We Stand With Seniors in early 2018 to draw attention to and seek solutions for the current and future challenges facing California older adults, families and caregivers.

“This debate will bring California’s critical issues to the forefront, allowing voters the opportunity to hear the candidates’ ideas and proposed solutions,” said Bruce Chernof, MD, president and CEO of The SCAN Foundation. “The fact that organizations within the aging, healthcare and business industries have all come together to #StandWithSeniors proves this issue transcends party lines and demographics. It’s time for the candidates to pay attention.”

Recent statewide surveys show that likely voters of all ages and backgrounds see and understand the widespread implications of the state’s senior crisis—nearly 84 percent of California voters saying they are more likely to support a candidate for governor who has a vision and long-term master plan to address the state’s increasing need for senior services.

Republican candidate John Cox recently agreed to participate in the debate and organizers await Lt. Gov. Gavin Newsom’s acceptance as well.


About We Stand With Seniors
West Health and The SCAN Foundation’s We Stand With Seniors… Will You? nonpartisan, public awareness and education campaign focuses on the specific challenges seniors and their families face in accessing high-quality, affordable healthcare, dental care and supportive services and the cost to the state if these challenges are not addressed. Keep up with #StandWithSeniors by visiting www.WeStandWithSeniors.org and following on Facebook @WeStandWithSeniors and Twitter @WeStandWSeniors.

The Bonnie J. Addario Lung Cancer Foundation Joins Forces with Patient Advocate Group to Advance Care for People with EGFR-Positive Lung Cancer

Posted: Aug 29, 2018 | Posted by Kassy Perry | Comments Off on The Bonnie J. Addario Lung Cancer Foundation Joins Forces with Patient Advocate Group to Advance Care for People with EGFR-Positive Lung Cancer

SAN CARLOS, Calif. (August 29, 2018) — The Bonnie J. Addario Lung Cancer Foundation (ALCF) and the EGFR Resisters, a patient-driven community of people living with epidermal growth factor receptor (EGFR) positive lung cancer and their loved ones, are working together to raise funds and increase awareness of projects that benefit the EGFR community.

“ALCF was founded to bring lung cancer patients into the conversation,” said Bonnie J. Addario, 14-year lung cancer survivor and ALCF founder. “We exist to support patient collaboration, and our partnership with the EGFR Resisters is a perfect example of that principle in action.”

EGFR gene mutations are commonly found in patients with non-small cell lung cancer, making up to 15 percent of patients in the United States and 35 percent of patients in Asia. While lung cancers with the EGFR mutation often respond well to specifically targeted therapies, patients commonly acquire resistance as additional genetic mutations develop that block the therapy’s benefits. The frequency of this cycle of therapy response followed by resistance is propelling researchers to look for new treatments that overcome therapy resistance.

“We’re excited about the possibilities this collaboration offers,” said Ivy Elkins, one of the EGFR Resisters founders and an advocate for lung cancer patients. “My hope is that patients around the globe will join forces with the EGFR Resisters to create a strong collective voice in support of research. Working with ALCF strengthens our voice and extends our reach into important corridors of medical research and funding.”

Combining the efforts of ALCF and its research arm, Addario Lung Cancer Medical Institute (ALCMI), with the patient advocacy of several hundred people around the globe who have come together to form the EGFR Resisters will enable greater outreach to obtain research funding. The initiative also raises awareness about the patients who have donated information and tissue samples. It provides researchers with a channel to recruit volunteers to participate in clinical trials for new therapies.

“Patients who are EGFR positive are a unique subset of lung cancer patients,” said Pasi A. Jänne, M.D., PhD., EGFR Resisters medical advisor, director of the Lower Center for Thoracic Oncology at Dana-Farber Cancer Institute and a professor of medicine at Harvard Medical School. “Many patients with EGFR enjoy a dramatic response to targeted therapy, followed by a profound letdown when the therapy stops working. Through this partnership, we can help to replace that disappointment with hope.”


About the Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest international philanthropies (patient-founded, patient-focused and patient-driven) devoted exclusively to eradicating lung cancer through research, early detection, education and treatment. The foundation’s goal is to work with a diverse group of physicians, organizations, industry partners, individuals, patients, survivors and their families to identify solutions and make timely and meaningful change and turn lung cancer into a chronically managed disease. ALCF has raised more than $30 million for lung cancer research and related programs. The foundation has received four stars from Charity Navigator and has earned the platinum GuideStar nonprofit seal of transparency. For more information about ALCF please visit www.lungcancerfoundation.org or follow us on Facebook or Twitter.

About the Addario Lung Cancer Medical Institute
The Addario Lung Cancer Medical Institute (ALCMI, voiced as “Alchemy”), founded in 2008 as a 501c(3) nonprofit organization by lung cancer survivor Bonnie J Addario, is a patient-centric, international research consortium driving research otherwise not possible. Working in tandem with its “partner” foundation, the Bonnie J. Addario Lung Cancer Foundation (ALCF), ALCMI powers collaborative initiatives in genetic (molecular) testing, therapeutic discoveries, targeted treatments and early detection. ALCMI overcomes barriers to collaboration via a world-class team of investigators from 26 member institutions in the USA, UK, and Europe. ALCMI combines scientific expertise found at leading academic institutions with patient access through its network of community cancer centers to accelerate research. Learn more at alcmi.net.

About EGFR Resisters
EGFR Resisters is a grassroots, patient-driven community dedicated exclusively to changing EGFR-positive lung cancer into a manageable chronic disease. Our community of survivors and caregivers is made up of hundreds of members from 24 countries who benefit from sharing knowledge and connecting with others who are experiencing similar journeys. The group’s aim is to use the power of collaboration to drive important research questions and fund novel research and clinical trials. Learn more at egfrcancer.org and by following us on Facebook and Twitter.

Free two-day medical clinic in 2019 hopes to serve 1,000 patients in need in Grass Valley

Posted: Aug 20, 2018 | Posted by Kassy Perry | Comments Off on Free two-day medical clinic in 2019 hopes to serve 1,000 patients in need in Grass Valley

PCG client The California Association of Oral and Maxillofacial Surgeons and California CareForce began a partnership in 2011 to hold clinics throughout the state, and they’ve been building a growing group of volunteers ever since.

Organizers are again gearing up for a massive two-day free medical clinic in Grass Valley, this time set for Nov. 9 and 10 of 2019. Organized under the umbrella of the nonprofit California CareForce, the first Nevada County clinic took place in November of 2015.

Over a two-day period, more than 550 patients received medical, dental and vision services free of charge. Many traveled from as far as Sacramento, Truckee, Yuba City and Stockton for cost-free services. Organizers say they are expecting an even greater need in 2019, as the number of those lacking access to proper healthcare continues to rise.

Planning for clinics such as this one begins more than a year in advance, said Nevada County retired registered nurse Daly Merrill, who is coordinating the 2019 Grass Valley clinic.

The massive effort requires recruiting, hosting, coordinating and feeding volunteers, as well as arranging meals and accommodations for medical professionals coming from out of town. To date, several locations are being considered, including the Grass Valley Memorial Auditorium (where it was in 2015) and the Nevada County Fairgrounds.

In addition to 185 general volunteers at the last event, each day included a sizable volunteer medical staff, which current organizers hope to replicate or expand. The last event included seven medical doctors, 30 nurses, 15 dental assistants, 15 dental hygienists, two dental X-ray technicians, 11 dentists, five oral and maxillofacial surgeons, three optometrists, two EMTs and many more medical technicians. In all, donated medical services amounted to more than $246,935.

Nevada County organizers and volunteers must raise $50,000 for the 2019 event, with CareForce kicking in an additional $10,000. The first of a host of fundraising events, “An Evening of Music with Steven Holland,” will take place from 6 to 9 p.m. on Aug. 19 at Wild Eye Pub in Grass Valley.

There is a $20 suggested donation, with a pub dinner and drinks available for sale. For those unable to attend, a special account has been set up by United Way of Nevada County, which has become a funding partner for the 2019 clinic.

Merrill has high hopes that the upcoming clinic will be able to treat even more patients — possibly as many as 500 each day. But this will all depend on fundraising and the number of professionals willing to volunteer their time, she said.

“I’ve worked at past clinics and the hardest thing is turning people away,” said Merrill. “I remember cleaning up after one clinic and looking outside to see a long line of people waiting who weren’t going to get treated. It just seemed so sad.”

While many who come to these clinics are uninsured, a large number are “under-insured,” meaning they can’t afford to meet the large insurance deductibles that would get them the costly care they often desperately need, said Mindy Oberne, who was a key organizer in the 2015 clinic.

“With increasing healthcare costs passed on to the consumer, clinics like these are needed now more than ever,” she said. “There are also more jobs today that don’t offer insurance.”

Patients are not asked to provide any paperwork, just an emergency contact number and possibly an address if there is a need for follow-up care. No other questions will be asked.

California CareForce provides everything the volunteer medical professionals need to perform their jobs, including vision exam equipment, dental equipment, tools, medicines, exam tables and dental chairs. Free eyeglasses are made on site.

Based in Roseville, California CareForce and The California Association of Oral and Maxillofacial Surgeons began a partnership in 2011 to hold clinics throughout the state, and they’ve been building a growing group of volunteers ever since.

All professionals are thoroughly vetted, and in the past, clinics have helped connect patients with local services. CareForce is a non-political, non-denominational organization with a mission to simply provide free health, dental and vision care services to inhabitants of California.

“We’re very privileged — we’re the only smaller town that has been able to host a CareForce clinic,” said Oberne. “There’s a huge overhead. If we can continue to make it easy on them — if our town can come together financially — we could do this every other year. I believe we can make this happen.”

Information on volunteering can be found at http://www.CaliforniaCareForce.org.

Candidate for California Governor John Cox Commits to We Stand With Seniors/KGTV ABC10 Debate

Posted: Aug 3, 2018 | Posted by Kassy Perry | Comments Off on Candidate for California Governor John Cox Commits to We Stand With Seniors/KGTV ABC10 Debate

(Sacramento) – Today, Republican candidate John Cox confirmed his participation in the We Stand With Seniors/KGTV ABC10 gubernatorial debate in San Diego this fall. The debate will be broadcast statewide and is co-hosted by We Stand With Seniors… Will You? and KGTV ABC10, in partnership with the California Broadcasters Association (CBA).

“We commend John Cox for being a part of this debate and letting voters know where he stands in addressing the critical issues facing our older population and their families,” said Shelley Lyford, president and chief executive of West Health. “For far too long issues like affordable housing, access to healthcare and caregiver support have been ignored in this state. This is an opportunity for candidates to share their plans, so voters can make the right decision in November.”

The Golden State faces a looming crisis. By 2030, nearly one-fifth of the state’s population will be over the age of 65, yet the state is woefully unprepared to care for this rapidly growing demographic. Fortunately, statewide surveys show that voters see and understand the widespread implications of this crisis and want California’s next governor to tackle it head-on by creating a master plan for aging.

“We are thrilled John Cox has committed to #StandWithSeniors by agreeing to participate in the We Stand With Seniors/KGTV ABC10 debate. Despite older adults making up more than half of likely voters, it seems candidates and policymakers have historically ignored their needs. This debate will finally allow candidates to publicly address the challenges faced by California’s older adults, families, and caregivers and share their ideas for solutions,” said Bruce Chernof, MD, president and CEO of The SCAN Foundation.

The We Stand With Seniors/KGTV ABC10 debate provides an unparalleled opportunity for voters to see where the candidates stand on a number of issues that directly impact their lives. The campaign is partnering with CBA to make the debate available statewide to its member stations. We Stand With Seniors looks forward to working with Lieutenant Governor Gavin Newsom’s campaign to confirm his participation as well.


About We Stand With Seniors
West Health and The SCAN Foundation’s We Stand With Seniors… Will You? nonpartisan, public awareness and education campaign focuses on the specific challenges seniors and their families face in accessing high-quality, affordable healthcare, dental care and supportive services and the cost to the state if these challenges are not addressed. Keep up with #StandWithSeniors by visiting www.WeStandWithSeniors.org and following on Facebook @WeStandWithSeniors and Twitter @WeStandWSeniors

Is California Failing Seniors? Voters Say Yes.

Posted: Jun 19, 2018 | Posted by Kassy Perry | Comments Off on Is California Failing Seniors? Voters Say Yes.

Voters Say Next Governor Needs Master Plan for Aging; More than Half Say They Would Even Pay Higher Taxes if It Meant Better Healthcare and Support Services for Seniors

(Sacramento, CA) – An overwhelming majority (84 percent) of California voters would be more likely to support a candidate for governor who has a vision and long-term master plan to address the state’s increasing need for senior services – and more than half (57 percent) would be willing to support a tax increase to fund it. These are among the key findings of a statewide voter survey conducted June 8-11 and released today by We Stand With Seniors…Will You?

“Voters across the political spectrum and demographics clearly understand the state is not doing enough to ensure we can care for our growing senior population and they want something done now, before it’s too late,” said Shelley Lyford, president and CEO of West Health. “Scaling best practices, expanding senior-specific programs and models of care that are working, and better utilization of existing resources can go a long way to address these critical needs.”

West Health, along with The SCAN Foundation, launched the nonpartisan, nonprofit We Stand With Seniors campaign earlier this year to educate policymakers about the needs of California seniors.

According to the Public Policy Institute of California (PPIC), the state’s 65-and-older population is projected to grow nearly 90 percent. That is four million people by 2030, totaling 8.6 million seniors.

“Unless we address the growing needs of our seniors now by developing a master plan for aging, the state will be left with the same broken, fragmented system that is expensive and ineffective for families and taxpayers alike. Often, older adults and their caregivers find themselves slowly robbed of their dignity, choice and independence but with leadership here in California, it doesn’t have to be that way,” said Bruce Chernof, MD, president and CEO of The SCAN Foundation.

Two out of three voters think the state is not doing enough for seniors now (64 percent) nor is it prepared to address their future needs (59 percent). The survey results come as voters prepare to select their next governor in November. And in a state where addressing homelessness and public safety are top priorities among voters (72 percent and 79 percent, respectively), a full 68 percent of voters believe that caring for our older adults, including supporting them with the tools to live, in accordance with their needs, values and preferences, is also a top priority.

“The human impacts and financial costs to the state of experimenting with imperfect fixes to address older adults’ broad care needs would be significant. Developing a master plan for aging will help California support older adults, caregivers and families,” Chernof said.

Broad Support for Increased Access to Quality, Affordable Senior Services Spans Political Spectrum, Age and Ethnic Lines

At a time of deep political polarization, California voters from all backgrounds agree the state needs to invest in high-quality senior services and the next governor should have a master plan to address the needs of our growing senior population:

  • Supporting a candidate for governor with a vision and plan to address senior needs meets or exceeds 70 percent along the political spectrum, including Republican, Democrat and Decline to State voters.
  • All age groups are more likely to support a gubernatorial candidate with a vision and plan for our growing senior population.
  • Super majorities of voters across racial and ethnic backgrounds (70 percent and higher) are more likely to support a candidate for governor who has a plan to address aging needs.

Super Majorities Support Services to Allow Aging in Place

Recent surveys show that 87 percent of individuals wish to stay in their homes as they age. California lags behind other states in addressing its aging population’s needs across many sectors including workforce, social services, affordable housing and caregiver supports; all of which are critical to enable people to successfully age in their homes and communities. Without addressing issues on a system-wide basis, older adults and families will continue to face challenges to find the services they need to avoid institutionalization and remain in their homes and community.

  • Nearly nine out of 10 voters (88 percent) feel it is important for California to have a master plan to invest in services that allow seniors to age in place.
  • More than three out of four voters (76.4 percent) are more likely to vote for a candidate who understands and plans to address the need to educate and train the future workforce to innovate new products and services to meet the daily living needs of older adults who want to live at home.
  • More than three out of four voters (78 percent) would be more likely to vote for a candidate who has a vision and long-term master plan for aging if it included support for senior caregivers, such as a tax break, stipend for support or other type of support for caregivers. And 86.4 percent support California investing more in caregiver programs that assist those who care for aging family members.
  • Nearly three-quarters (73 percent) of California voters are concerned about their ability to pay for long-term care in the future.
  • Understanding that the high costs of housing negatively impacts seniors, 78.5 percent of voters are more likely to elect a candidate who has a plan to address senior housing needs.
  • Almost two out of three voters (63.4 percent) feel that California’s state government is not doing enough to provide services to help older Californians live independently at home.

In the coming months, We Stand With Seniors will continue to educate candidates and policymakers about the need for a master plan for aging in California, and will work with stakeholders to share best practices and develop plans to support the goal of ensuring California seniors can age safely and with dignity.


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About We Stand With Seniors
West Health and The SCAN Foundation’s We Stand With Seniors …Will You? nonpartisan, public awareness and education campaign focuses on the specific challenges seniors and their families face in accessing high-quality, affordable healthcare, dental care and supportive services and the cost to the state if these challenges are not addressed. Keep up with #StandWithSeniors on Facebook @WeStandWithSeniors and Twitter @WeStandWSeniors.

Survey Methodology
From Friday, June 8 through Monday, June 11, 2018, J. Wallin Opinion Research conducted a telephone survey of voters throughout the State of California, interviewing 1,000 respondents using live, professional interviewers, speaking Spanish and English languages and calling both mobile and landlines (59.9 percent of this survey was completed on mobile phones). A survey of this size yields a margin of error of +/-3.1percent (95 percent confidence interval). The sample is stratified, meaning that the demographic composition of our results matches the demographic composition of the state’s voting population.