A Journey With Lung Cancer

Posted: Jan 8, 2019 | Posted by Kassy Perry

By Amy Docker Marcus
Wall Street Journal
January 8, 2019

Two years ago, at the age of 55, Terri Ann DiJulio was diagnosed with lung cancer—for the second time.

Ms. DiJulio says she was devastated. In the 12 years since her previous bout with cancer, her mother had died from lung cancer and two of her mother’s siblings were still fighting the disease.

Nonetheless, Ms. DiJulio says she was struck by how much had changed in the intervening years, not only for her but also for her family. There were better methods of early detection, more treatments and greater recognition that many people who get cancer, like her mother, never smoked.

During her first lung cancer, Ms. DiJulio had the right lower lobe of her lung removed. This time, the oncologist told her, there was a new method of radiation that would let her avoid a painful surgery and spare the rest of her lung. The approach let Ms. DiJulio, who is an avid bike rider, get back to cycling. In September, she rode 260 miles to raise $10,100 for the Bonnie J. Addario Lung Cancer Foundation.

“I had better options than my mother,” says Ms. DiJulio. “But I want the next generation after me to have better options than I do.”

Tuesday’s report by investigators at the American Cancer Society showed good news in the fight against cancer, with overall cancer mortality rates steadily declining over a 25-year period. The researchers estimated that, mainly due to people stopping smoking and earlier detection methods for many cancers, there were an estimated 2.6 million fewer cancer deaths from 1991 to 2016. There are also growing numbers of new drug treatments for lung cancer, including Merck & Co.’s Keytruda, which was approved by the Food and Drug Administration in 2015 to treat a form of lung cancer.

Still, 25% of all cancer deaths are due to lung cancer, and more people die from lung cancer than breast, prostate and colorectal cancer combined, says Rebecca Siegel, lead author of the American Cancer Society’s report. “We have made great progress,” says Ms. Siegel, the strategic director of surveillance information services at the American Cancer Society. “But the number of deaths from lung cancer is still shocking.”

Ms. DiJulio says her family’s story illustrates some of the ways things have gotten better, along with the many challenges that remain.

Her first lung cancer was found accidentally. Ms. DiJulio says she felt pressure in her chest so her doctor sent her to the hospital, concerned about a possible heart problem. Instead, scans turned up a nodule on her lung. Doctors said they weren’t sure if it was cancer and advised that she be closely monitored with regular scans. Ms. DiJulio, who had smoked around five cigarettes a day from the time she was 17, quit smoking.

Two years later, doctors said the scans revealed the nodule was growing, so Ms. DiJulio underwent surgery. “I woke up without the lower right lobe of my lung,” she said.

Eighteen months after Ms. DiJulio’s surgery, her mother, who never smoked, was also diagnosed with lung cancer. Ms. DiJulio’s mother felt pressure in her chest and went to the hospital thinking she was having a heart attack. She died in 2011 at the age of 79.

After Ms. DiJulio’s mother was diagnosed, doctors recommended that close family members receive screening using low-dose computed tomography. The screening found lung cancer in Ms. DiJulio’s aunt and uncle, who had no symptoms of disease. The disease was caught early, Ms. DiJulio says. They are both still alive; Ms. DiJulio’s aunt is now involved in a clinical trial involving Keytruda in patients who have a recurrence of lung cancer.

The U.S. Preventive Task Force endorsed CT scans to detect lung cancer in high-risk individuals in 2013.

According to the American Cancer Society report, lung-cancer screening has potential to identify tumors much earlier and has been shown to reduce cancer mortality by 20% in current or former smokers with a history of smoking the equivalent of two packs a day for 15 years or more. But many people, including Ms. DiJulio and members of her family, wouldn’t have qualified for screening under those guidelines.

Ms. Siegel says there are still challenges with making screening available to a wider population because the equipment is expensive, and it requires a prior conversation with a physician explaining risks and benefits.

Bonnie Addario, a 14-year lung-cancer survivor and chair of the foundation, says there is a need for more drugs, including targeted therapies. The foundation supports research into an inherited gene found in some lung-cancer patients and the development of early-detection screening methods for family members of lung-cancer patients.

Recently, Ms. DiJulio and her family members started discussing participating in a familial genetics research study. She thinks more personalized treatments may be the best hope, not only in her family’s long-running odyssey with lung cancer, but for improving mortality rates in the coming 25 years, too.

“I have a 20-year-old beautiful and vibrant niece, and I think about her,” says Ms. DiJulio. “My family has benefited from the advances, but we need to do more.”

Dorinson: What Would Churchill Do?

Posted: Jan 7, 2019 | Posted by Kassy Perry

By Patrick Dorinson
The Cowboy Libertarian
January 6, 2019

Now that the Democrats have taken the Speaker’s gavel in the House, the media is filled with predictions from the pundit class as to what will happen. They don’t know any more than you and me but when you need to fill 24 hour cable news this is what passes for informed political commentary.

Here in California the Democrats have tightened their grip on state government to the point that Republicans hold no statewide offices and in the state legislature they barely have enough members to serve on committees.

The once dynamic Republican Party in California that gave us Ronald Reagan and regularly could be counted on to deliver its large haul of Electoral College votes to Republican presidential candidates, is on life support and in danger of becoming as extinct as the dinosaurs.

While the media write the obituaries on the California Republican Party, some Republicans are writing newspaper columns opining on what needs to be done to resuscitate the party and make it viable again.

Mind you the ones writing all these columns are the same ones who are responsible for its demise. That’s like having the autopsy performed by the same doctors who killed the patient.

They want to hire consultants to analyze the data from the last election and convene focus groups to find out why they lost and why their party is shrinking to the point they are outnumbered by voters who decline to state party preference.

And more importantly, they blame President Trump for all their electoral woes conveniently forgetting that their party’s political health has been declining long before Donald Trump arrived on the scene.

But politics isn’t just about analyzing data and folks ain’t lab rats to be viewed by consultants behind one-way glass in a focus group.

Politics is visceral and comes from the gut and the heart- something Democrats have known and been using effectively for years.

Trump tapped into that in a way they never have and never could. The Never Trump GOP consultants in California have been exposed as frauds that have been selling the same snake oil to the Republican faithful for years and losing elections.

California Republicans don’t stand for anything. They have no real message or messengers who can deliver it if there was one.

Led by Arnold Schwarzenegger, squishy Never Trump Republicans have come up with something called New Way California which is nothing more than a diet cola version of Democrats.

Arnold and his crew say Republicans need to be open to compromise.

What makes him think Democrats want to compromise? Why should they?

Democrat’s idea of compromise is like the old Soviet Union’s idea of compromising on nuclear weapons during the Cold War. “What’s mine is mine. What’s yours we’ll compromise.”

The New Way crowd says nothing about cutting back on California’s bloated government and the army of bureaucrats whose future pensions will eventually bankrupt the state.

And by the way when he was Governor what did Arnold do to help build a better Republican Party?

Not a damn thing. In fact he proved the only thing he cared about was saving his own skin for re-election in 2006 when he joined forces with Democrats and signed AB 32 sucking up to the climate change crowd.

He now travels the world in his private jet telling the rest of us to drive electric cars while he burns carbon by the ton.

Like Democrats the New Way Republicans say they are for the little guy but as Ronald Reagan said, “You can’t be for big government, big taxes and big bureaucracy and still be for the little guy.

The California Republican Party will never rise from the ashes by listening to Arnold Schwarzenegger and his band of elitists who think they know best.

Nor will they become relevant again by emulating the Republican Party in more conservative regions of the country.

Republicans must return to becoming a party of Westerners.

Since the days of the pioneers Westerners have traditionally distrusted big government like the kind California now has.

Republicans need to preach self-reliance as the key to opportunity.

Republicans need to understand that playing catch-up on identity politics and surrendering to the lazy tired analysis that “demographics is destiny”  is no substitute for putting more money in everyone’s pocket.

Republicans need to remind folks that with rights comes responsibility and people are free to do as they please as long as it ain’t illegal and don’t scare the horses.

Republicans will need to articulate policies that will grow the base of middle class voters not simply replace the ones who are voting with their feet and leaving California.

Republicans will need to tell every hard working Californian regardless of race, creed, color or sexual orientation that there ain’t enough money to pay for all the grandiose plans of the Democrats.

Even if they taxed rich folks 100% there ain’t enough of them to pay for their schemes either.

Republicans should warn all Californians that eventually-when they have squeezed all they dare out of those same rich folks-Democrats will come for them and bleed them of all their hard earned money.

And since middle income voters believed they were exempt when Democrats said they were only going to soak the rich with tax hikes, nobody will be left to speak for them when their taxes are inevitably raised.

When Adolf Hitler was rising to power in Germany in the 1930s, Winston Churchill was in the political wilderness having lost his position in the government. He seemed out of touch to some and many wrote his political obituary-much like California Republicans today.

He returned to Parliament as a back bencher with no real power. And it was there Churchill became a lone voice warning his countrymen that Herr Hitler had bad intentions and they must be prepared for another war.

History shows that Churchill was right and when war did come, his country turned to him to lead them to victory.

California Republicans need to be like Churchill warning their fellow citizens of the coming fiscal storm.

At every opportunity when Democrats propose new spending they should ask where is the money coming from?

They should remind their fellow Californians that nothing is free no matter what the Democrats say.

And when the bills come due for the spendthrift ways of the Democrats at least they can say…We told you so.

Lewis: A responsible strategy to address the needs of the homeless

Posted: Jan 4, 2019 | Posted by Kassy Perry

By Jeffrey Lewis
Turlock Journal
January 4, 2019

Turlock and its surrounding communities need to address our growing homeless population.  The needs are great, and the challenge is significant, but not impossible.

No one wants to be homeless, cold or sick.  Many homeless individuals are women and men who got lost in a depersonalized healthcare and mental health system; people whose lives changed when the economy took a dive and they lost their jobs.  Others became part of a drug culture that has and continues to devastate their lives and the lives of their families and friends. Turlock has a handful of nonprofit organizations that have taken the lead in addressing the needs of the homeless.  The City of Turlock has offered its assistance, too.  The core of the problem? There is no plan.

No single nonprofit agency or government agency has taken the lead in developing and implementing a strategy.  Without a leader and a strategy, discussions continue to be circular, frustrations of downtown business owners grow, community members continue to raise safety concerns and homeless women and men do not know where to turn. Acting without research wastes resources and time that the homeless and the members of our community do not have to spare. Our success as a community will be insured by our ability to integrate long-term and short-term planning and to maximize available funding and services.

What is in place?

We Care provides nighttime shelter for homeless men and housing solutions.  The Turlock Gospel Mission has focused on caring for homeless women and families. The Salvation Army is taking care of whoever walks through their door. United Samaritans Foundation feeds people lunch, provides showers, outreach and food boxes; and the Turlock Gospel Mission offers free breakfast and perhaps additional meals.  Haven Women’s Center provides care for homeless domestic abuse survivors and their children.  Prodigal Sons and Daughters focuses on teenagers who may be homeless, using drugs or alcohol and treating adults for their addictions.

These are all functioning organizations that are providing worthwhile services. Our community and the community’s homeless individuals, need them all.  However, let’s look for a moment beyond the homeless community’s basic needs for food, shelter and safety. Are there training programs that some homeless individuals may qualify for?  Are there housing programs to begin to help bring a sense of normality to the lives of homeless women, children, families and men?  What is the role of Stanislaus County, and what have they done to help Turlock?

The questions are endless.  The frustrations continue to mount across government, business, nonprofits and those legitimately in need.  Compounding these problems is the need for access to medical care and mental health services.

While each of these steps is important and valuable, no one has stepped forward to take ownership of the issue and build a strategy to address the multiple problems faced by various stakeholders (or take ownership). It’s a new year.  Let’s begin 2019 with a plan called, “Building A Better Turlock” which is outlined, below.

Step One:  Who is Serving the Homeless?

If the Mayor and City Council want our help,  Legacy Health Endowment wants to step up.  To begin, we will lead an effort to survey the major programs serving the homeless.  The survey will consider the services provided, the fundraising needs, the gaps in care and a recommended path forward.  The survey would be transparent by working with a handful of leaders of homeless programs, the City, the Turlock Journal Editor and downtown business owners.  This would help ensure that we are focusing on the issues that matter, the questions and answers that are being raised and considered and conclusions about how best to address the challenges we face.

Step Two:  Addressing the Health and Mental Health Needs of the Homeless

Recently, Legacy Health Endowment provided funding to the Castle Family Health Center and UCSF Fresno School of Medicine to launch a mobile healthcare clinic.  Physician residents from the UCSF Fresno program are providing physicals, flu shots and other primary care services to ensure that people who need healthcare services have access.  The EMC Health Foundation has funded a full-time mental health clinician to work with the homeless to begin to understand the kinds of mental health issues involved.  Throughout the next few months, we will report to the Mayor and City Council on whether, and to what extent, there is a healthcare crisis for the homeless, as well as how it is being addressed today and tomorrow.

Step Three:  Articulating a Plan

In 60 days,  LHE  will present elected officials, business leaders, homeless advocates and the community with a report on our findings and very specific recommendations.

Step Four:  Important Interim Steps

Throughout the next 60 days, we propose the following:

  1. The Turlock Gospel Mission or United Samaritans utilize its meals programs and food bank to serve the homeless;
  2. We urge the Salvation Army and the Turlock Gospel Mission Homeless Assistance Ministry (H.A.M. Day Center) to open their doors for people to a have a warm place to rest at night since We Care is usually at capacity these days.  Imagine lining up cots on the gymnasium floor of the Salvation Army Building to offer a homeless individual  a warm bed;
  3. The City Executives, led by Maryn Pitt, (who is knowledgable and passionate about solving these problems locally) will work with the County to identify funds to help the Gospel Mission fund the operation of the warming center;
  4. We Care to dedicate two beds in its shelter to provide shelter for homeless men being released from EMC Hospital, with Covenant Care at Home providing the follow up medical care for not more than 10 days to help get these men back on their feet and into the community;
  5. Golden Valley Health Centers continue its mobile nurse program helping treat homeless women and men with immediate healthcare needs.  The program has and continues to be a great success; and
  6. It is long overdue to have a centralized food distribution strategy where individual nonprofits are not picking up the donated food and then being charged for it.

This is a 60-day plan.  Not perfect, but a plan, nevertheless.  It allows all the stakeholders in our community to participate and it promotes and embraces transparency as we begin to move forward.  Once the report is finished, we will offer to present the findings to the Mayor, City Council, City Manager and staff.

There are no quick or easy solutions to addressing the needs of the homeless, but we can, we must, stop the finger pointing and build a solution.  The need is great and the challenge enormous, but not impossible.  My email is jeffrey@legacyhealthendowment.org  — let me know if you want to ‘Help Build A Better Turlock.’

— Jeffrey Lewis is the President and CEO of Legacy Health Endowment.  The views expressed are his own.

Supreme Court Justice Ruth Bader Ginsburg has Malignant Lung Nodules Removed

Posted: Dec 21, 2018 | Posted by Kassy Perry

By Bonnie J. Addario
December 21, 2018


Today, Supreme Court Justice Ruth Bader Ginsburg, 85, underwent a lung procedure to remove malignant lung nodules. Doctors discovered the nodules during tests to treat rib fractures from a fall in November.

It was not that long ago that it was rare to be diagnosed with lung cancer and live more than a few years. Now, with so many treatment options and tools to diagnose the disease more accurately, survivorship is on the rise. Early detection is more common for many diseases, including breast, colon or prostate cancer.

Twenty nine percent of cancer is lung cancer – a staggering number.

Massive advocacy and funding efforts have helped the public understand that with early detection, a cancer diagnosis doesn’t mean an absolute death sentence.

Unfortunately, however, for the country’s deadliest cancer, lung cancer, early detection still only happens as a rare or accidental occurrence, even though lung cancer kills more Americans every single year than these other cancers combined.

In fact, if you can catch lung cancer before it spreads, the likelihood of surviving five years or more improves to 55%. We are pleased that some insurers are covering early detection but we need to continue to push to ensure that it is available to patients. Currently screening is primarily for people who smoke. We now know that around 70% of newly diagnosed people either never smoked or quit decades ago.

The instance of young people being diagnosed today is on the rise. These young people are never smokers, and many are athletes.

….if you can catch lung cancer before it spreads, the likelihood of surviving five years or more improves to 55%…

Take for example Taylor Bell Duck, a 19-year-old collegiate soccer player. She was in the best shape of her life, but for some reason could not pass her school’s fitness exam. After numerous doctor visits with no results, the discouraged athlete assumed her best times were over and quit the team. After a spate of respiratory illnesses and numerous prescriptions of antibiotics from her campus’ student health services clinic, Taylor’s mother called the clinic and begged that her daughter to receive a chest x-ray.

The clinic gave into the pressure, the x-ray showed a mass, but it was quickly dismissed, and neither Taylor nor her family were told about it – simply because she was a 21-year-old student. A few months later, stomach pain and suspected appendicitis landed her in the ER. A CT scan of her abdomen and pelvis showed she had a lung mass, a collapsed left lung and early signs of cancer. Taylor’s life was saved, but by an accidental discovery revealed by a CT scan ordered for unrelated concerns.

Once early screening becomes routine, perhaps we can turn a ravaging cancer into a manageable disease, and luck will no longer need to be a factor in our approach to this disease. No one should  ever be diagnosed with any cancer or disease that could have been prevented or, at the very least, interrupted before it becomes deadly.


Nationwide Program Brings Hope Home to Lung Cancer Patients During the Holidays

Posted: Dec 12, 2018 | Posted by Kassy Perry

Volunteers sing carols, provide holiday decorations, clean homes and provide emotional support to lung cancer patients

(SAN CARLOS, Calif. and RIDGEFIELD, Conn.)—For the second consecutive year, the Bonnie J. Addario Lung Cancer Foundation (ALCF) and Boehringer Ingelheim Pharmaceuticals, Inc., have come together to brighten lung cancer patients’ holiday season through the “Bring Hope Home for the Holidays” partnership. This program is helping lung cancer patients make holiday memories across the nation through December 20, 2018.

With the support of ALCF, Boehringer Ingelheim volunteers are visiting lung cancer patients’ homes and bringing good deeds to families. To help raise their spirits during the holidays, the volunteers will help lung cancer patients with holiday activities, such as trimming the tree, wrapping gifts, writing cards or hanging lights outside of the house.

“While the holidays are a wonderful and magical time for families, I personally recognize the hardships face by lung cancer patients this time of year,” said Bonnie J. Addario, lung cancer survivor and founder and chair of the ALCF. “I was diagnosed with lung cancer during the holidays, and because of this, we have committed to making the season a little brighter for lung cancer patients and their families. The work that Boehringer Ingelheim and their amazing employees do through this program has a profound impact for these patients and their families.”

“Bring Hope Home for the Holidays is a unique effort to give back to the lung cancer community and deliver cheer and joy to their homes during this special time of year,” said Kelli Moran, senior vice president, specialty care, Boehringer Ingelheim Pharmaceuticals, Inc. “With the support of caring volunteers from Boehringer Ingelheim, we hope to make a positive difference in their lives and demonstrate the personal connection we feel with these remarkable people.”

Despite being the most deadly form of cancer, the stigma of lung cancer leads to underfunding. In fact, according to The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute, lung cancer is the number one cancer killer of men and women in every ethnic group in the U.S., taking more lives than breast, prostate and colon cancers combined. However, lung cancer research receives less funding than any other cancer, so it’s important to understand that eight in 10 lung cancer patients never smoked or quit smoking decades ago.

To learn more about “Bring Hope Home for the Holidays,” visit: http://www.lungcancerfoundation.org/bringhopehome/

About “Bring Hope Home for the Holidays”
The Bonnie J. Addario Lung Cancer Foundation (ALCF) and Boehringer Ingelheim are committed to making this holiday season brighter, with their “Bring Hope Home for the Holidays” national effort. The program recognizes the hardships faced by lung cancer patients and, through the support of volunteers, will deliver holiday help and cheer to patients in their homes in 21 U.S. cities. For more information, visit http://www.lungcancerfoundation.org/bringhopehome/

About the Bonnie J. Addario Lung Cancer Foundation (ALCF)
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) non-profit organization and has raised more than $30 million for lung cancer research and related programs. For more information about the ALCF please visit www.lungcancerfoundation.org or follow us on Facebook or Twitter.

About Boehringer Ingelheim
Boehringer Ingelheim Pharmaceuticals, Inc., based in Ridgefield, Conn., is the largest U.S. subsidiary of Boehringer Ingelheim Corporation.

Boehringer Ingelheim is one of the world’s top 20 pharmaceutical companies. Headquartered in Ingelheim, Germany, the company operates globally with approximately 50,000 employees. Since its founding in 1885, the company has remained family-owned and today creates value through innovation for three business areas including human pharmaceuticals, animal health and biopharmaceutical contract manufacturing.

Boehringer Ingelheim is committed to improving lives and providing valuable services and support to patients and their families.  Our employees create and engage in programs that strengthen our communities. Please visit www.boehringer-ingelheim.us/csr  to learn more about how we make more health through our Corporate Social Responsibility initiatives.

For more information please visit https://www.boehringer-ingelheim.us, or follow us on Twitter @BoehringerUS. 

My Patient Rights Urges Californians to Use Holiday Gatherings to Discuss New Tools Available to Combat Opioid Crisis in 2019

Posted: Dec 11, 2018 | Posted by Kassy Perry

(Sacramento, CA) – My Patient Rights and the California Chronic Care Coalition are urging California families to use visiting with family members during the holidays to make sure that they are aware of a new law taking effect in January 2019. The new law addresses the opioid crisis by requiring prescribers of pain-relieving opioids to also offer a prescription for the opioid-overdose reversal drug, naloxone to high-risk patients. AB 2760 was passed overwhelmingly by the California Legislature and signed into law in September 2018 by Gov. Edmund G. Brown, Jr.

Accidental opioid overdoses account for about 80 percent of all opioid emergencies and 83 percent of prescription opioid-related deaths are unintended or accidental. While anyone taking opioids is at potential risk for an overdose, there are certain high-level, at-risk groups that are susceptible, so being prepared with the overdose reversal drug, naloxone, in close proximity is essential.

This problem has become so acute that the U.S. Surgeon General issued its first advisory in 13 years recommending emergency treatments like naloxone – which is so important to saving lives – be available for consumer use.

“For patients with chronic illness, pain relieving opioids are a lifeline but the risk of an overdose increases the more you take to combat the pain,” said Liz Helms, president and CEO of the California Chronic Care Coalition. “Requiring naloxone to be offered at the same time as prescribing an opioid pain medication will go a long way in preventing accidental overdoses and needless deaths. And since many caregivers are family members, having the conversation over the holidays will ensure that everyone is aware of the availability of this potentially life-saving emergency treatment.”

There are many reasons for accidental opioid overdose emergencies and these emergencies can occur even when opioids are used as directed. Those at high risk for accidental opioid overdose include:

  • Those who take moderate to high doses of prescription opioids, usually over 90 morphine milligram equivalents a day
  • Those who consume certain other sedating medications or alcohol, particularly benzodiazepines
  • Those who have a history of substance abuse or previous overdose
  • Those who have children, other family, friends and loved ones who have access to unlocked or unsecured prescription opioids

In 2016, more than 214 million prescriptions were written and filled for opioids. With this many patients taking opioids for medical conditions and medical procedures, it’s important to have the discussion and prepare for potential overdoses.

“Naloxone is a tool that can immediately save lives. And I hope this new law will provide an opportunity for discussion of the potential for accidental opioid overdose and how to prevent it,” said Assemblymember Jim Wood (D-Santa Rosa), author of AB 2760.

Anyone who uses opioids for pain control is at risk for an opioid overdose emergency. When you are together with family this holiday season, make sure you and your families are prepared for the unexpected by talking about opioids, the potential for overdose even when used correctly, having naloxone with you, and recognizing the signs of overdose:

  • Slow or shallow breathing
  • Slowed heartbeat and weak pulse
  • A loss of consciousness
  • Pale, blue or cold skin

Knowing the risks, recognizing the signs and having naloxone on-hand will go a long way in potentially saving a life from accidental opioid overdose.

About My Patient Rights
My Patient Rights was launched by the California Chronic Care Coalition to help people who have been denied treatment or medicines, experienced delays or are dissatisfied with the decisions made by their health plan.

About California Chronic Care Coalition
The California Chronic Care Coalition (CCCC) is a unique alliance of more than thirty leading consumer health organizations and provider groups that engage policy makers, industry leaders, providers and consumers to improve the health of Californians with chronic conditions. We envision a system of care that is accessible, affordable and of a high quality that emphasizes prevention, coordinated care and the patient’s wellness and longevity.

California Chronic Care Coalition Launches ‘Choose Smart California’ Campaign Encouraging Californians to Be Smart Consumers When Selecting Health Plans

Posted: Nov 20, 2018 | Posted by Kassy Perry

It’s time to “talk turkey” about your medical needs to avoid health plan hassles in 2019

(SACRAMENTO) – As part of its My Patient Rights program, the California Chronic Care Coalition (CCCC) is launching the Choose Smart California campaign. This effort will help guide consumers to be smart health care shoppers and give them the necessary tools to ask the tough questions required to select a health plan for both themselves and their families during the current open enrollment season.

“Healthcare is a real kitchen table issue. We encourage Californians to use the upcoming Thanksgiving holiday to ‘talk turkey’ with their families about selecting the healthcare plan that best fits their needs,” said Liz Helms, president and CEO of the California Chronic Care Coalition. “We want to ensure all consumers, and particularly those with chronic conditions, have access to their doctors, get the most value for their healthcare investment and are armed with the information they need to avoid obstacles that could cause delays in treatment or denials of their vital healthcare needs.”

Those obstacles include restricted access to specialists, tiered drug formularies, reduced prescription drug benefits, high deductibles vs. low co-pays, and the new co-pay accumulators which are all used by health plans to reduce their costs. Unfortunately, these barriers also reduce consumers’ access to care. A recent survey of 600 doctors found that 89% said they no longer have adequate influence over the healthcare decisions for their patients, with 87% saying health insurers actually interfere with their ability to prescribe individualized treatments.i

Health plans also regularly make changes to coverage that can have a significant impact on care. Therefore, it is important that Californians carefully scrutinize the details as to what is and what isn’t covered in their plans before making a choice.

For example, Express Scripts and Caremark, companies that handle pharmacy benefits for more than 200 million Americans are removing more than 90 medications from their list of covered medications at the end of 2018.ii If you rely on your health plan to pay for your medications, now is the time to check and see if the ones you take are still covered.

Another area where insurers have fallen short is with their continued discrimination regarding mental illness treatment. A 2017 report shows that reimbursement rates for mental health and substance abuse treatment providers are far lower than for other medical providers.iii When insurers don’t adequately reimburse providers, many choose not to participate in the plan networks, leaving families paying the price. Given the increasing numbers of substance abuse and mental health issues among Americans, this is a growing concern and consumers should be wary if such treatment is needed.

Everyone agrees that cost is an important consideration when choosing a health plan, but consumers need to understand that there are trade-offs which should to be taken into account.

“Don’t just choose the cheapest plan, because in the long run it might not be the most economical,” advises Cindy Settles, a benefits specialist with Clinton Polley Insurance Brokers, Inc. “Although a plan may have a cheaper premium, the real question is what your total out-of-pocket expenses under the plan are, including the premium, deductible, copayment and coinsurance.”

Choose Smart California encourages consumers to be smart — because your health depends on it and not all health plans are the same. To guide the process, use the Choose Smart California checklist outlines key questions consumers need to ask when they purchase or select a plan, such as:

  • What ongoing care do I need, and is it covered?
  • Can I continue to see my current physician?
  • Are my current medications covered?
  • Can I afford the care I need?
  • When do I need prior authorization for treatment?
  • Are there caps on my benefits?

California’s open enrollment period for 2019 runs from October 15, 2018 through January 15, 2019. The last day to apply for coverage with an effective date of January 1, 2019 is December 15, 2018.

To view the Choose Smart California health plan checklist, please visit: www.MyPatientRights.org\checklist.

About the California Chronic Care Coalition
The California Chronic Care Coalition (CCCC) is a unique alliance of more than 30 leading health organizations and provider groups that promote the collaborative work of policy makers, industry leaders, providers and consumers to improve the health of Californians with Chronic conditions. We envision a system of care that is accessible, affordable and of a high quality that emphasizes prevention, coordinated care, and the patient’s wellness and longevity. http://www.californiachroniccare.org

About MyPatientRights.org
The California Chronic Care Coalition launched MyPatientRights.org in California in 2016 and is currently expanding the program to all 50 states to help people who have been denied treatment or medicines, experienced delays or are dissatisfied with the decisions made by their health plans.

i Putting Profits Before Patients: Provider Perspectives on Health Insurance Barriers that Harm Patients (Aimed Alliance 2018); See also: Who’s Calling the Shots? Doctors Worry about Insurers Overriding Their Treatment Decisions (Joanne Finnegan, FierceHealthcare 2018)
ii 90+ Medications to be Dropped by Insurance (Benita Lee, MPH, GoodRx 2018)
iii Addiction and Mental Health vs. Physical Health: Analyzing Disparities in Network Use and Provider Reimbursement Rates (Melek, et. al, Milliman Research Report 2017); See also, Insurance System Still Discriminates against Mental Illness. Time to Fight Back. (Patrick J. Kennedy, USA Today 2018)

Bonnie J. Addario Lung Cancer Foundation’s Simply the Best Dinner and Gala Honors Those Working on the Front Lines to Fight Lung Cancer

Posted: Nov 19, 2018 | Posted by Kassy Perry

ALCF’s 13th annual gala brings together lung cancer patients and their families to recognize dedicated researchers and clinicians

(SAN CARLOS, Calif.Nov. 19, 2018) — The Bonnie J. Addario Lung Cancer Foundation (ALCF) recognized outstanding contributors in research, treatment and caregiving at its Simply the Best Dinner and Gala, which took place in San Francisco on Saturday, November 9. The annual event is a celebration of survivors, hope and determination that brings together lung cancer patients and their families to recognize top minds in the lung cancer field.

“When we held our first gala 13 years ago, our hopes of turning lung cancer into a chronic, manageable disease seemed like a far-distant dream,” said Bonnie J. Addario, 14-year lung cancer survivor and ALCF founder. “But thanks to the work of pioneers like Drs. James Mulshine and Scott Antonia, we’re moving closer and closer each day. It’s an exciting time for lung cancer research, and we’re thankful to the many who support our efforts to advance research and patient care for helping to bring the dream within reach.”

Honorees at the event included:

James L. Mulshine, M.D., professor and retired graduate college dean and provost for research for the Institute of Translational Medicine at Rush University, received the Asclepios Award, which honors research pioneers in the fight to end lung cancer:

Excerpt from Dr. Mulshine’s comments accepting the award:

“Diet, exercise, lifestyle, all these things are important, but we have early-detection tests, both imaging and molecular that are coming along, that will inform individuals to make better choices about their health. This type of diagnostic technology is scaffolding in which we’ll add molecular diagnostics and immunotherapy and cure even a greater fraction of people. We need all of science, but we need all people working with us to live as healthy of a life as they can live and make each day precious.”

Scott J. Antonia M.D., Ph.D., chair of the thoracic oncology department at the H. Lee Moffitt Cancer Center and Research Institute, was the recipient of the A Breath Away from the Cure Award, which honors individuals for excellence in oncology, early detection and coordinated treatment.

Excerpt from Dr. Antonia’s comments accepting the award:

“I really do appreciate this honor from this group, but the fact is, any success that I may have had would have been impossible without the great team that I have at the Moffitt Cancer Center. Perhaps most importantly, none of this could have occurred if it weren’t for the bravery and the selflessness of people with lung cancer who choose to participate in clinical trials. They have no idea when they participate in a trial, as I have no idea, whether or not this is going to help an individual patient. These people understand that there may be some unpredicted severe toxicity, and more often than not the motivation – of course there’s always the hope the treatment will have some benefit to them – but more often than not the overriding, driving reason for people to participate in clinical trials is to contribute to the science, to contribute to the advancement of the care for this disease so that people in the future – other people – can benefit.”

Diana Pak, caregiver to Donna Terry, was honored with the Wind Beneath My Wings Award, which celebrates the caring, compassionate people who go above the call of duty to care for a loved one facing lung cancer.

Excerpt from Donna Terry’s comments presenting the award to her caregiver, Diana Pak:

“First off, I would like to thank the Bonnie J. Addario Lung Cancer Foundation for giving me this opportunity to honor my amazing caregiver, Diana Pak, in such an extraordinary way. I could spend lifetimes trying to show Diana how grateful I am to her for all that she has done for me and my family, but it would never be enough. She cares for us in ways that are selfless and generous – never asking for anything in return, and never taking any credit for all that she does.”

In addition to the awards, the evening featured a dinner with wines generously donated by Margaret Duckhorn of Duckhorn Vineyards. ABC7’s Chery Jennings emceed the awards presentation and auction, which was followed by music and dancing.

The Simply the Best Dinner and Gala is ALCF’s largest annual fundraising event. All proceeds from the event directly benefit ALCF’s patient services program and clinical research projects. This year’s presenting sponsor, Takeda Pharmaceuticals, along with other gala sponsors, made the successful event possible. More information about the 13th annual Simply the Best Dinner and Gala is available here.

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 millionfor 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 the ALCF, please visit www.lungcancerfoundation.org or follow us on Facebook or Twitter.

Patients Launch New Study to Shed Light on EGFR-Positive Lung Cancers

Posted: Nov 15, 2018 | Posted by Kassy Perry

Scientists, physicians and patients collaborate to improve
treatment for rare cancer

San Carlos, CA (November 15, 2018) – The Addario Lung Cancer Medical Institute (ALCMI), Champions Oncology and EGFR Resisters today announced the launch of a new study to create a novel bank of patient derived xenograft (PDX) models to help researchers better understand why patients living with epidermal growth factor receptor (EGFR) positive lung cancer develop resistance to treatment over time, or do not respond at all.

The brain-child of two patient-driven organizations, the Addario Lung Cancer Foundation (ALCF) and the EGFR Resisters, this study is a collaboration with leading lung cancer researcher and pioneer in EGFR mutant lung cancer, Pasi A. Jänne, MD, PhD of Dana-Farber Cancer Institute and Champions Oncology and is powered by ALCMI.

EGFR gene mutations are commonly found in patients with non-small cell lung cancer, making up 10 to 15 percent of patients in the United States and about 50 percent of young adults with lung cancer.  There are many variations of EGFR gene mutations. Some EGFR patients with specific genetic markers (L858R, T790M, exon 19 deletion) respond well to targeted therapies initially, but later develop resistance to treatment. To date, there are no known effective therapies for patients with one rare EGFR mutation (exon 20 insertion).   The purpose of this study is to develop a resource of EGFR mutant cancer models to help drive research in this difficult disease.

“I’m pleased to be part of a collaborative effort that will help researchers move faster toward finding effective lung cancer treatments,” said Teri Kennedy, an EGFR-positive lung cancer patient and one of the founders of EGFR Resisters. “As a lung cancer patient and a friend of many other lung cancer patients and their families, I know firsthand how heartbreaking it is to develop resistance to treatment. This grassroots, patient-driven community hopes to empower patients to participate to find cures and work with researchers to advance research.”

The ALCMI-012 study, A Prospective Biospecimen Collection Study from Patients with EGFR mutant Tumors, will collect a small amount of tumor or pleural fluid from patients who require biopsies or surgery for medical reasons and agree to donate a portion of their tumor. Champions will develop these EGFR PDX models by injecting a piece of the donated tumor or pleural fluid (from around a patient’s lungs) into a special type of mouse that has a limited immune system. Research has shown that tumors grown in these “host” mice retain features similar to the patient’s original tumor.  Most importantly, these models will be available to researchers worldwide through ALCMI.

“This study provides an opportunity to change EGFR positive lung cancer into a manageable, chronic disease,” said Pasi Jänne, M.D., Ph.D. the study’s lead investigator.  “It’s my hope that every patient diagnosed with a resistant EGFR mutation will take part and help speed the progress toward lasting treatments.”

The study, currently open to patients in the U.S. and Canada, is powered by ALCMI’s remote study capabilities.  There is no need to travel to another institution to participate in this study.  ALCMI’s study team will work with you and your treating physician to secure your tumor donation.  To learn more visit ALCMI’s website or call Nurse Alicia at 888-403-EGFR (3437).

“We are pleased to offer patients living anywhere in the US and Canada an opportunity to positively impact research in their disease by participating in this study.  Our team is available to the patient and physician community to answer questions and to support your participation” said Tony Addario, chair and CEO of the Addario Lung Cancer Medical Institute (ALCMI).

“Champions Oncology is pleased to collaborate in this patient-driven initiative that will advance research for patients with EGFR gene mutations. The team’s shared scientific goals, expertise and commitment ensures that we will engage the patient community to understand the genomics of EGFR and can work with researchers to develop better treatments,” said Jennifer Jaskowiak, director, strategic alliances and partnerships at Champions Oncology.

About the Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest international philanthropies 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 managed, chronic disease. The ALCF was established on March 1, 2006 as a 501c(3) non-profit 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 the 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) non-profit 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.

About Champions Oncology
Champions Oncology, Inc. is engaged in the development of advanced technology solutions and services to personalize the development and use of oncology drugs. The Company’s technology platform is a novel approach to personalizing cancer care based upon the implantation of primary human tumors in immune deficient mice followed by propagation of the resulting engraftments, or Champions TumorGrafts, in a manner that preserves the biological characteristics of the original human tumor in order to determine the efficacy of a treatment regimen. The Company uses this technology in conjunction with related services to offer solutions for pharmaceutical and biotechnology companies seeking personalized approaches to drug development that can lower the cost and increase the speed of developing new drugs. TumorGrafts are procured through agreements with a number of institutions in the U.S. and overseas as well as through Champions’ Personalized Oncology Solutions business, in which results help guide the development of personalized treatment plans for individual patients. For more information visit Champions Oncology, Inc’s website (www.championsoncology.com).

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 760 members in 26 different 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

California needs a plan for LGBTQ seniors

Posted: Nov 8, 2018 | Posted by Kassy Perry

By Senator Scott Wiener and Karyn Skultety
San Francisco Chronicle
November 8, 2018

Of the many issues and challenges that Gov.-elect Gavin Newsom and the Legislature will be required to confront, one that rarely gets the attention it deserves is the growth of our senior population. By the year 2030, there will be 4 million new seniors in California. We are not prepared to deal with the fiscal and social costs that this growth will incur.

Recognizing the urgency of this issue, Newsom called for the development of a “master plan for aging with dignity” after California’s June primary election. We heartily agree and enthusiastically support state leaders prioritizing older adults and coming up with solutions to California’s looming senior care crisis. But we have our work cut out for us.

In California, 20 percent of seniors live in poverty. In San Francisco, that number jumps to 30 percent. A lack of affordable and safe housing, the threat of eviction and profound income inequality are stripping this community of its heroes.

While all of the state’s seniors face similar problems as they age, such as access to health care, long-term care affordability, economic security and affordable housing, LGBTQ seniors experience amplified challenges.

One of these challenges is ensuring they will be able to receive equal access to support services as they age. Reports show that LGBTQ seniors are not using existing long-term care and aging services. Another is the very real fear that if they are no longer able to care for themselves and are at risk of losing housing or facing eviction, they could be forced to deny who they are if living in a care facility is their only option.

This fear is justified.

Research tells us that LGBTQ seniors face discrimination and mistreatment in long-term care facilities. According to the National Senior Citizens Law Center, 78 percent of LGBTQ Americans felt it would be unsafe to be “out” in a care facility and 43 percent reported personally witnessing or knowing individuals who experienced instances of mistreatment. For transgender seniors, these risks are even higher.

Tom Nolan, left talks with Jorge Rodriguez and Marcy Adelman from the LGBT aging policy task force, in San Francisco.. Nolan, known as one of Northern California’s most fiery warriors of gay rights meets is now using his efforts to reach out to help the elderly LGBT community.

Tom Nolan, left talks with Jorge Rodriguez and Marcy Adelman from the LGBT aging policy task force, in San Francisco.. Nolan, known as one of Northern California’s most fiery warriors of gay rights meets is now using his efforts to reach out to help the elderly LGBT community. Photo: Lacy Atkins / The Chronicle 2013

To address this particular issue, I, as a member of the San Francisco Board of Supervisors, worked hand-in-hand with the LGBT Aging Policy Taskforce to create and implement an LGBT senior bill of rights in long-term care facilities. This ordinance requires staff in long-term care facilities to respect the dignity of all LGBT residents, and made it illegal to discriminate on the basis of sexual and gender identity, as well as on HIV status. Last year my SB219 placed the protections from the San Francisco ordinance into state law, and ensures LGBT seniors throughout our state know their rights when entering long-term care facilities.

In California especially, an “out” senior shouldn’t have to choose between living on the streets and feeling unsafe in a nursing home or assisted living facility. More than 40 percent of LGBTQ seniors don’t even feel comfortable using housing assistance programs.

People of all ages and backgrounds share a common goal: to age in the place they call home, surrounded by people they love, in a community where they feel they belong. One of the most basic necessities of life is having a roof over one’s head and one that is affordable. In California — as you all know — affordable housing is scarce. Senior housing is even more limited. And, senior housing for LGBTQ Californians is almost nonexistent.

Now is the time for the state to develop a master plan for aging that truly meets the needs of all Californians.

Former San Francisco supervisor Scott Wiener represents San Francisco in the state Senate and serves as chair of the Senate Human Services Committee. Karyn Skultety is the executive director of Openhouse, a nonprofit that provides housing, services and community for LGBTQ seniors.