Archive for the ‘Clients In The News’ Category

Holiday Program Brings Hope Home to Lung Cancer Patients

Posted: Dec 7, 2017 | Posted by Kassy Perry | Comments Off on Holiday Program Brings Hope Home to Lung Cancer Patients

Holiday Program Brings Hope Home to Lung Cancer Patients

Volunteers wrap presents, decorate trees, sing carols, hang outdoor holiday lights, write cards and bring much needed help to lung cancer patients throughout the country

SAN CARLOS, CA and RIDGEFIELD, CT (December 7, 2017)–The Bonnie J. Addario Lung Cancer Foundation (ALCF) and Boehringer Ingelheim Pharmaceuticals, Inc., have joined forces to make the season brighter for lung cancer patients 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, 2017.

With the support of ALCF, Boehringer Ingelheim volunteers are visiting lung cancer patients’ homes, delivering holiday help for people fighting lung cancer — the leading cause of cancer deaths nationally and in every state. To help raise their spirits during the holidays, these volunteers will help lung cancer patients with holiday activities, such as trimming the tree, wrapping gifts, writing cards, or lighting the outside of the house.

“The holidays are hectic and wonderful moments for most. As a mother of three, I always wanted to make them magical for my family,” said Bonnie J. Addario, lung cancer survivor and founder and chair of the ALCF. “When I was diagnosed with lung cancer during the holidays, I found it almost impossible to make ‘magic’ for them. It broke my heart. This year it is our goal to ease the burden of patients by going to their homes and helping them prepare for the season. We are excited to partner with Boehringer Ingelheim and their amazing employees to help make a little magic 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 Jean-Michel Boers, president, Human Pharma, 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.

“‘Bring Hope Home for the Holidays’ is a seasonal reminder that we need to provide loving support to people fighting this leading cancer killer,” Addario said. “Our goal is to transform lung cancer into a chronically managed disease and eventually find a cure.”

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

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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
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, make timely and meaningful change and turn lung cancer into a chronically managed disease by 2023. 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 is one of the world’s 20 leading pharmaceutical companies. Since its founding in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel treatments for human and veterinary medicine.

Boehringer Ingelheim’s oncology research is driven by a passion to advance clinical practice and a determination to improve the lives of patients who are battling cancer. Through our own scientific innovation and partnerships, we are focused on discovering and providing novel best-in-class, breakthrough cancer medications that fit the needs of patients, caregivers and healthcare professionals.

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. To learn more about how we make more health for more people, visit our Corporate Social Responsibility Report.

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

Outsmarting Lung Cancer

Posted: Nov 21, 2017 | Posted by Kassy Perry | Comments Off on Outsmarting Lung Cancer

Date: 11/17
Outlet: Women Total Health & Wellness
Author: Heather StringerWAC_fall17160

Bekah Cunningham was concerned when she was diagnosed with bronchitis and pneumonia for the third time in 2015. She was 28 and had never suffered from illnesses before, and the antibiotics and allergy medications prescribed by doctors were not alleviating her cough and fatigue. After trying to cope for nine months, Bekah’s fatigue worsened and she started coughing up blood. She also discovered a golf ballsized lump in her right breast.

In early 2016, Bekah was diagnosed with stage II breast cancer when she received another piece of devastating news from her pulmonologist: The fluid in her lungs contained cancer cells. She had stage IV lung cancer that had spread to her breast, liver, bones and lymph nodes.

“I was absolutely stunned,” says Bekah, who lives in Fairhope, Georgia. “I was not a smoker, nobody in my family had lung cancer, and I’d always been relatively active.” She is one of more than 220,000 Americans who will be diagnosed with lung cancer in 2017—a form of cancer that has historically had a low survival rate.1 Lung cancer accounts for more cancer deaths each year than the number of deaths caused by breast, prostate and colorectal cancer combined.2 Survival rates are low largely because symptoms (such as persistent coughing or shortness of breath) do not manifest until the later stages of the disease. When the cancer has spread to other parts of the body (stage IV cancer), curative treatments such as surgery or radiation therapy are much less feasible. These patients typically have only a 2 percent chance of being alive five years after diagnosis.

Desperate for guidance, Bekah called the Bonnie Addario Lung Cancer Foundation in San Carlos, Calif., and learned that she had reason to hope for better odds. Molecular testing of her cancer cells revealed that the cancer was ALK-positive, which meant she was eligible for targeted therapy. Certain forms of non-small cell lung cancer have genetic abnormalities in the cancer cells that the disease is dependent on, and in the last few years several new drugs have been approved that specifically target these mutations.

“The mutations produce a signal to the cancer cells to stay alive, grow and spread, and these drugs can silence that signal,” says David Ross Camidge, MD, PhD, director of the lung cancer program at the University of Colorado Cancer Center. “It’s not a cure, but it can suppress the disease.”

While the majority of people with lung cancer have at least some history of smoking, these targetable mutations are probably not related to smoking, says Dr. Camidge. Now there are licensed targeted therapies available for four different mutant forms of lung cancer (EGFR, ALK, ROS1, and BRAF), and roughly one quarter of all people with lung cancer in the Western world test positive for one of these mutations, says Dr. Camidge. That percentage increases dramatically, though, in young people with the disease. According to preliminary results from the Genomics of Young Lung Cancer Study, 77 percent of patients under the age of 40 had either the EGFR, ALK or ROS1 mutation.3 The study was launched in 2014 by the Bonnie Addario Lung Cancer Foundation, a non-profit organization aiming to eradicate lung cancer through research, early detection, education and treatment.

“Precision medicine is a paradigm changer for all cancer, especially for skin and lung cancers because these two have the highest percentage of patients with targetable genomic mutations,” says Bonnie J Addario, a lung cancer survivor and founder of the Bonnie J Addario Lung Cancer Foundation. “Identifying those mutations when you are first diagnosed is critical because there are targeted drugs that will be more effective than standard chemotherapy.”

Bekah witnessed the dramatic differences between these two forms of treatment because she started chemotherapy while her doctors were awaiting results of her molecular testing for mutations. While on chemotherapy for three months, scans showed only small regression of the disease, and Bekah struggled with nausea and fatigue the week after each infusion. When she switched to Xalkori and later Alecensa—drugs that target the ALK abnormality—the effect was noticeable.

“I had an exceptional response to the treatment, and the cancer has shrunk to the point that you cannot see any cancer on my scans,” says Bekah, who has been on targeted therapy for a year, “I have my energy back, and I’ve been able to go back to work and resume my life again.”

Although her initial response to the medication has been positive, Bekah also understands that cancer cells typically evolve to avoid suppression by the targeted therapy. As a result, she will most likely need to switch to a different targeted drug at some point.

Bekah’s tumor also tested positive for a marker known as PDL-1, which may increase her likelihood of responding to drugs that help the immune system fight the disease. But this marker may not be as useful in predicting response to immunotherapy when patients also have driver mutations such as ALK or EGRF, explains Dr. Camidge. “Immunotherapy should still be considered experimental in this setting,” he says.

Living Longer Than Expected

Like Bekah, Samantha Mixon of Jonesboro, Alabama, never considered lung cancer when she started feeling pain in her right shoulder blade. Her doctor prescribed muscle relaxants, and she lived with the discomfort for four years until she started experiencing a different form of pain: intense migraines and vomiting.

Her mother rushed her to an emergency room, and an MRI showed that Samantha had a tumor in her brain. She was relieved when a neurosurgeon successfully removed the tumor, but the biopsy results suggested that the tumor had originated elsewhere. After undergoing a PET scan, Samantha learned that she had stage IV lung cancer. The pain in her right shoulder blade had been caused by cancer growing in her lung, and the cancer had spread to her brain.

“I was a single mom with a 7-year-old daughter, and I was given 12 to 18 months to live,” says Samantha, 37. “It was very difficult news for me and my family.”

Her doctor explained that there was a chance that she could live longer if she tested positive for one of the genetic mutations, and two weeks later, she received good news: The cancer had the EGFR mutation. Cautiously optimistic, Samantha started taking a targeted therapy called Tarceva in January 2013, and within three months the cancer in her lungs had shrunk 60 percent.

“That was the first time I started to feel hope again,” she says. After nine months of disease regression, though, her doctor noticed cancer growing in one of her lungs, and he recommended radiation treatment. The radiation was successful, and since then, the cancer has remained stable while Samantha continues taking Tarceva. Samantha remarried last year, and although she worries that the disease will eventually progress, she knows there are second-line drugs that target some of the molecular forms of resistance that develop on Tarceva.

Seeking Earlier Detection

Although Bonnie Addario has celebrated the advancements in lung cancer treatment in the last several years, her long-term goal is better screening for the disease. Now the only people who qualify for lung cancer screening are those aged 55 to 74 who have a history of smoking a pack a day for 30 years or more, who currently smoke, or who have quit smoking within the last 15 years.

“This eliminates all young people and non-smokers who could have lung cancer,” Addario says. She hopes in the future that improvements in our understanding of the differing biologies of lung cancer subtypes could lead to the development of a “liquid biopsy” that would be used to screen for lung cancer in a much broader population.

Although researchers have yet to develop such a lung cancer blood test, one recent advancement in the field suggests this idea is possible. In patients with stage IV disease, there are already several companies that have developed blood tests to detect mutations found in cancers. These new techniques are referred to as a “liquid biopsy”. Addario’s foundation announced plans to collaborate with Biocept, Inc., in a clinical trial evaluating the liquid biopsy technique. If blood sampling proves to be accurate, then this technique will be less invasive than the current method of taking tissue samples from the lung.

Addario, who has helped to raise more than $30 million for lung cancer research, is beginning to see how research and better outcomes for patients are changing stereotypes about lung cancer, and it’s only the beginning, she says. Dr. Camidge, for example, is planning a new kind of celebration at his hospital for stage IV lung cancer patients: One for those who have survived a decade after diagnosis. “This was unheard of a couple of years ago because patients didn’t live that long, but now we have more than enough to get together for a big party,” he says.

“People are starting to see lung cancer as a chronic disease,” Dr. Camidge says. “Doctors have to be creative with treatment as the cancer evolves, but people can have a normal quality of life and go on to live much longer than in the past.”

What Is a Liquid Biopsy?

A liquid biopsy is performed by testing a sample of blood for the presence of circulating cancer cells, known as circulating tumor cells. Perhaps more importantly, samples of blood obtained from a liquid biopsy can also be tested for cell-free tumor DNA (cfDNA), which are fragments of DNA shed by cancer cells into a patient’s bloodstream.

Because cancer cells are constantly “shedding” parts of their DNA, specific genetic mutations (alterations) within these pieces of DNA can provide invaluable information to healthcare providers and ultimately help guide optimal treatment options for each patient.

Importantly, the bits of cfDNA obtained from a liquid biopsy can provide information to healthcare providers in the following areas:

  • If or to what extent the cancer is responding to treatment
  • Optimal treatment options specific to the DNA mutations of the cancer cells
  • Earlier detection of cancer compared with standard screening measures
  • Molecular and genetic realtime changes occurring in a patient’s cancer cells in response to treatment and growth

Through empowering and educating patients, funding cutting-edge research, building strategic collaborations and raising public awareness, our goal is to transform lung cancer into a chronically managed disease within 10 years and ultimately to find a cure.

For more information and support about lung cancer and its treatment; www.CancerConnect.com a lung cancer resource and social community of lung cancer patients sharing information and support.

The Lung Cancer Living Room: learn about early detection, treatment options, molecular testing and clinical trials from specialists: http://www.lungcancerfoundation.org/patients/support/

Meet Bonnie J. Addario

“We are committed to involving our patients in every aspect of our work to cure lung cancer. With the patient in the center of the cancer paradigm, we can create ‘transformational research’ care that begins with the patient, leads to research, and rapidly returns new treatments to the patient.”

—Bonnie J. Addario

“The key to unlock the code to cures… resides in the patient. Currently their participation in clinical trials and specimen donations for research is very, very low. Patients must be valued and given a ‘seat’ at the table and a ‘voice’ in the conversation where all decisions are being made about their survival. If they are added to the ‘solution’ process we will be able to move much faster in finding cures for all diseases.”

—Bonnie J. Addario

Long before its official start date, a single diagnosis led to the founding of the ALCF when in 2004 Bonnie was diagnosed with lung cancer. At the age of 56 she was a wife, mother and grandmother, the president of Olympian Oil Company and the Commercial Fueling Network, and one of 1.4 million people worldwide and 225,000 Americans newly diagnosed with lung cancer every year. Faced with a 5-year lung cancer patient survival rate of 15.9 percent, a statistic that has not significantly improved in 40 years, and a 5 percent survival rate for a Stage 3b lung cancer patient, which was Bonnie’s diagnosis, the situation as told by these numbers was daunting and discouraging. Following a 14-hour surgery to remove one lobe, radiation and chemotherapy treatments that invaded her formerly predictable world, Bonnie became a lung cancer survivor with a new purpose in life.

After her diagnosis, Bonnie became active in local lung cancer programs and quickly became frustrated with the lack of a leading patient voice, progress in lung cancer treatments, and overall survivorship. In 2006, Bonnie combined her business acumen with her desire to impact lung cancer care today, the result – the Bonnie J. Addario Lung Cancer Foundation (ALCF).

ALCF’s goal is urgent – to significantly improve the inexcusably low survival rate of lung cancer patients. With Bonnie’s vision and support of her family and the lung cancer community, ALCF has become one of the largest sources of non-profit patient-focused funding dedicated to changing lung cancer from a terminal diagnosis to a chronically managed disease by 2023, ALCF’s vision and 10-year goal that was announced in 2013.

Having become a unifying voice among patients and thought leaders, establishing unique patient-oriented programs, a novel research consortium, and national outreach activities, Bonnie is turning to the international lung cancer community to work collaboratively towards personalized medicine/therapies.

About the Bonnie J. Addario Lung Cancer Foundation

The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patientdriven) 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 by 2023. 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.

References:

  1. American Cancer Society. Available at: https://www.cancer.org/cancer/small-cell-lungcancer/about/key-statistics.html
  2. National Cancer Institute, Surveillance, Epidemiology, and End Results Program. Available at: https://seer.cancer.gov/statfacts/html/lungb.html
  3. Preliminary results of the Genomics of Young Lung Cancer Study, http://www.lungcancerfoundation.org/media/press-releases/results-from-genomics-of-young-lung-cancerstudy-promises-new-research-better-outcomesand-more-hope-for-lung-cancer-patients/

Read more from Women Total Health & Wellness here.

National Collegiate Equestrian Association 2017 National Champions Honored at White House

Posted: Nov 21, 2017 | Posted by Kassy Perry | Comments Off on National Collegiate Equestrian Association 2017 National Champions Honored at White House

Texas A&M Women’s Equestrian Team Recognized by the President 

White House Photo/Andrea Hanks

White House Photo/Andrea Hanks

For the first time in history, a National Collegiate Athletic Association (NCAA) Women’s Equestrian team traveled to the White House for a ceremony honoring its accomplishments. On Friday, November 17, President Donald J. Trump recognized the Texas A&M Equestrian Team for besting a field of twelve other NCAA Equestrian teams to capture the 2017 National Collegiate Equestrian Association (NCEA) National Championship. During the ceremony, the Texas A&M Aggies presented President Trump with a custom pair of Anderson Bean cowboy boots personalized with the Texas A&M logo.

Members of the National Champion Texas A&M team attended the ceremony along with head coach Tana McKay and Senior Associate Athletic Director, Kevin Hurley. The team also had a chance to tour the Capitol guided by U.S. Representative Bill Flores of Texas.

“This was a tremendous experience for our student-athletes and my team, staff and I are humbled and honored to have had this opportunity,” McKay said. “This is an exciting time to be part of NCAA Equestrian and to be recognized at this level means so much to me and is a credit to the work the NCEA has been doing to grow the sport.”

The White House has a long standing tradition of honoring national championship teams, dating back to 1865.

“We are thrilled that the White House has recognized the sport of Equestrian by honoring the Texas A&M Aggies on their 2017 national championship title,” NCEA Executive Director Dr. Leah Fiorentino said. “These young women are excellent models of the finest student-athletes in the nation and are strong ambassadors for the sport of Equestrian at the collegiate level.”

The NCEA titles the National Championship award based on a bracket style tournament where the winning team advances to the next round. Riders from two teams compete on the same horse and earn scores from a panel of judges during the head-to head competition. The judges score each ride and the higher score earns a point for the team. The Texas A&M Equestrian team is comprised of elite caliber riders who compete in two disciplines, Hunter Seat and Western. The Hunter Seat riders compete in over-fence work and flat-work, whereas the Western riders compete in reining and horsemanship classes.

“The National Champion Texas A&M Aggies take tremendous pride in carrying the NCEA championship banner, representing all the riders across the country in collegiate equestrian,” said Kevin Hurley, a longtime advocate for collegiate equestrian and critical to the expansion of the sport across the nation. “As we continue to grow our sport, we are grateful for opportunities of this stature to nationally showcase our young women as role models in our sport.”


About the National Collegiate Equestrian Association (NCEA)

The National Collegiate Equestrian Association (NCEA), a non-profit corporation, was created as a governing body to advance the sport of Equestrian for women at the collegiate level. In 1998, Equestrian was identified and adopted by the National Collegiate Athletic Association (NCAA) and the Committee of Women’s Athletics (CWA) as an emerging sport for women at the Division I and II levels. The NCEA, in concert with the mission and vision of the NCAA, is committed to providing collegiate opportunities for female equestrian student-athletes to compete at the highest level, while embracing equity, diversity and promoting academic and competitive excellence. www.collegiateequestrian.com 

Perry Communications Group Recognized for Elevating Seniors’ Issues in California

Posted: Nov 17, 2017 | Posted by Kassy Perry | Comments Off on Perry Communications Group Recognized for Elevating Seniors’ Issues in California

Firm honored by California Association of Area Agencies on Aging for bringing awareness to seniors’ issues in the state

(Los Angeles, CA)—Perry Communications Group (PCG), a Sacramento-based strategic communications firm has received the President’s Award from the California Association of Area C4A-PhotoAgencies on Aging (C4A). This annual honor is at the Board President’s discretion, and recognizes the person or group who exceptionally promotes the work of the Area Agencies on Aging (AAA) in California. The award was accepted this week in Los Angeles during C4A’s 2017 Annual Meeting and Allied Conference.

“C4A represents California’s 33 area agencies on aging and is one of the leading voices on aging issues in California,” said Kassy Perry, President and CEO of PCG. “California leads the nation in the number of senior residents, yet their voices are seldom heard. We are delighted to partner with C4A to bring awareness to the issues aging Californians face such as housing and health care, and how AAA are adjusting to provide much needed services.”

Following the success of a June 2016 campaign during Elder Abuse Awareness Month, this year PCG expanded the campaign to include a digital component which increased the range of the campaign to key stakeholders.  Over the course of one month, the campaign reached more than 3 million people, generated nearly 700 emails and tweets to legislators and was shared across multiple platforms.

“PCG continues to help increase awareness about the concerns of providing services to seniors through the Area Agencies on Aging in California. As California shifts its demographics from youth to maturity, it is imperative we invest in safety, services and supports for older Californians. PCG has been paramount to helping the AAA’s communicate this message to legislators and Californians,” stated Diane Kaljian, Board President of C4A. “I’m thrilled to grant PCG with the President’s Award.”

Up next, PCG and C4A will partner to create a series of infographics that showcase Vision 2025. AAA’s created the plan to address the changing demographics in California and how the AAA will remain relevant, fiscally viable and responsive. The infographic series will be released early next year.

For 21 years PCG has helped its clients positively navigate the most important policy issues facing our nation. PCG tackles pressing health care issues including those dealing with senior health, health care reform and chronic diseases.


TWEET THISCongrats to @PerryCommGroup for receiving the President’s Award from @C4A_Sacramento. The award recognizes the person or group who has exceptionally promoted the work of the Area Agencies on Aging (AAA) in California. #AgingisAllAboutLiving


About Perry Communications Group

Perry Communications Group is an independent, full-service strategic communications firm specializing in public relations and public affairs. We work at the center of issues that matter and give new perspective to the issues and events making headlines today, as well as those that will in the future. We shape ideas, opinions, decisions and social change. The bottom line for us is always the same – we’re invested in the cause and our clients’ work. For more information, visit PCG at www.perrycom.com or call (916) 658-0144.

Oversight urged for 340B drug discount program

Posted: Nov 1, 2017 | Posted by Kassy Perry | Comments Off on Oversight urged for 340B drug discount program

Date: 11/1/17
Outlet: Capitol Weekly
Author: William Remak

Mark Twain once proclaimed, “The government of my country snubs honest simplicity, but fondles artistic villainy, and I think I might have developed into a very capable pickpocket if I had remained in the public service a year or two.”

These humorous words may elicit a smile, but clearly ring true more than a century later, and most certainly apply to the 340B drug discount program, a program which was created with the best intentions but, sadly, over time has lost its way.

Because of vague language as to what truly defined a legitimate “340B patient” and covered entities, the program grew incredibly quickly

The bad news is, due to a lack of enforcement or accountability, the program has fallen victim to variations of pickpocketing, leaving our most vulnerable out. The good news is that our leaders in Washington, DC have a unique opportunity to fix this problem head-on with bipartisan “honest simplicity.”

To back up and put things into perspective, the 340B drug discount program was created by Congress twenty-five years ago to help uninsured or vulnerable patients gain better access to prescription medicine. It requires manufacturers of prescription drugs to reduce prices of outpatient drugs for federally funded clinics and certain hospitals that are considered to serve a high number of economically disadvantaged patients and communities.

In 2010, the agency responsible for oversight of the 340B program allowed program participants that lacked an on-site pharmacy to contract with unlimited off-site pharmacies, and the Affordable Care Act extended the program to reach multiple hospitals, referral centers and cancer centers.

Because of vague language as to what truly defined a legitimate “340B patient” and covered entities, the program grew incredibly quickly, prompting former Health and Human Services Secretary Kathleen Sebelius to declare that the program “has expanded beyond its bounds.”

To make matters worse, many bad actors emerged amid this maelstrom of confusion and scant federal accountability. The 340B program was designed in such a way that allows its facilities to keep the savings generated between the cost of a drug acquired through the discount program and the price they charge a patient or insurer, thus incentivizing hospitals to prescribe more 340B drugs to more patients.

Because of a loophole in the program that some argue doesn’t explicitly require hospitals to only provide discounted drugs to uninsured or vulnerable patients, hospitals and contract pharmacies are taking advantage of the opportunity and selling 340B drugs to anyone receiving medical care at their hospital or affiliated clinics.

The result? Fully insured patients, not the economically vulnerable and needy, are receiving these discounted drugs at full price, and hospitals and contract pharmacies are able to pocket – or, dare I say, pickpocket – the difference between a discounted drug purchasing price and the amount a patient or insurer pays for the full cost of the drug.

All the while, health care costs increase and struggling Californians and Americans who should benefit from this program are sent to the back of the line while these entities make money.

But there is hope. With so much mudslinging and daggers flying on the health care front inside the Beltway, here’s an opportunity for Republicans and Democrats to join forces to fix the 340B program in the same manner as when they created it a quarter of a century ago.

There is no basis or need for political grandstanding when simple but important remedies are desperately needed.

  • Congress should make it a top priority to modernize the program, and they can start by calling for a better, clearer definition of a 340B patient so that these discounted drugs truly benefit those with the greatest financial strain.
  • Congress should increase transparency so that we all see and know exactly how these funds are used. No hospital or provider should be using funds for needy patients without accountability – human lives are at stake here.
  • Congress should reexamine contract pharmacy arrangements – as then-Secretary Sebelius and others have rightly stated, the program has expanded too fast, too soon. Expanding the program beyond the original focus has created more opportunities for drug diversion and higher costs, which the nonpartisan federal General Accounting Office has cited.

Government leaders, processes and issues have clearly evolved since the days of Mark Twain, but public skepticism and angst about “truth in advertising,” let alone outright honesty in serving the intended public, has not.

But here’s a golden opportunity for our Washington leaders to restore a well-intentioned program to its original effectiveness without any bombastic floor debates, name calling, or filibustering, and ensure that our most vulnerable get the help they desperately need.

It’s time for us to call upon Congress to do the right thing and fix the 340B program.

Ed’s Note: William Remak is founder and CEO of the California Hepatitis C Task Force and chair of the National Association of Hepatitis Task Forces

The Bonnie J. Addario Lung Cancer Foundation is the Only Lung Cancer Foundation to Receive Highest Level of Recognition by GuideStar

Posted: Oct 24, 2017 | Posted by Kassy Perry | Comments Off on The Bonnie J. Addario Lung Cancer Foundation is the Only Lung Cancer Foundation to Receive Highest Level of Recognition by GuideStar

The Bonnie J. Addario Lung Cancer Foundation is the Only Lung Cancer Foundation to Receive Highest Level of Recognition by GuideStar

ALCF receives top honors for its fiscally responsible approach to ending the world’s deadliest cancer

ALCF logoSAN CARLOS, Calif. (October 24, 2017)–The Bonnie J. Addario Lung Cancer Foundation (ALCF) has earned the Platinum GuideStar Nonprofit Profile Seal of Transparency, the highest level of recognition offered by GuideStar, the world’s largest source of nonprofit information. By sharing metrics that highlight progress ALCF is making toward its mission, GuideStar helps donors move beyond simplistic ways of nonprofit evaluation and collects, organizes, and presents information about each nonprofit’s mission, legitimacy, impact, reputation, finances, programs, transparency and governance.

“We believe our donors should know that the funding they give to ALCF directly benefits patients and families impacted by lung cancer,” said ALCF Executive Director David LeDuc. “We are proud that 88 cents out of every dollar donated goes to patient services and research to help us achieve our goal to turn the world’s deadliest cancer into a chronically managed disease by the year 2023.”

To achieve the platinum level, ALCF added extensive information on the GuideStar Nonprofit Profile including financial information, quantitative evidence about goals and strategies and progress toward its mission. By taking the time to provide this information, ALCF demonstrates its commitment to transparency and to giving donors and funders meaningful data to evaluate success.

Of the more than 340,000 nonprofits in GuideStar’s database that provide industry data to compete for this achievement, less than one percent receives GuideStar’s platinum ranking. In addition to the GuideStar recognition, ALCF has also earned the highest 4-star rating from Charity Navigator for its commitment to accountability and transparency.

Donors, partners and supporters can visit the Bonnie J. Addario Lung Cancer Foundation’s GuideStar Profile to learn more. The profile includes ALCF’s mission, goals, programs, costs, top accomplishments, reviews and the number of people that the organization helps.

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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, make timely and meaningful change and turn lung cancer into a chronically managed disease by 2023. 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 GuideStar NonProfit Profiles

The GuideStar database contains a profile for every tax-exempt nonprofit registered with the IRS. GuideStar encourages every nonprofit to claim and update its profile at no cost to the organization. Updating allows nonprofits to share a wealth of up to date information with the more than seven million people who visit GuideStar to learn more about nonprofit organizations each year.

International horse jumping competition comes to Murieta Equestrian Center

Posted: Oct 3, 2017 | Posted by Kassy Perry | Comments Off on International horse jumping competition comes to Murieta Equestrian Center

Date: 10/3/17
Outlet: Sacramento Business Journal
Author: Mark Anderson

About 5,000 fans and participants are in Sacramento County this week for the Sacramento International Horse Show.

Some 300 riders, along with their crews, trainers, groomers and spectators, are expected to fill some 5,000 hotel rooms through the final events on Sunday, said Mike Sophia, director of the Sacramento Sports Commission. Their hotel stays, restaurant meals and shopping are expected to have a $2 million impact on the local economy.

The Murieta Equestrian Center event this weekend is the only Northern California qualifier for the 2018 Longines International Equestrian Nations Cup jumping finals in Paris next April.

More than $200,000 in prize money will be awarded at the local event.

Sacramento has long been a destination for horse events. The Western States Horse Expo has been held at Cal Expo for 19 years, attracting thousands of attendees. It will return to Cal Expo in June for its 20th year.

The Murieta Equestrian Center in eastern Sacramento County holds an equestrian event at least once a month. It has nearly 380 stalls, temporary accommodations for more than 500 horses, and 3,000 bleacher seats.

Murieta features 19 arenas. This is its 10th year hosting the Longines horse jumping event.

The event started last week with riders arriving to practice at the Murieta Equestrian Center. Qualifying begins Thursday.

Admission for spectators is free until the events Friday and Saturday, when admission will be $20 and $25 respectively. Sunday’s events are free.

A new equestrian project is also proposed for rural El Dorado County. A new Springs Equestrian Center project is currently proposed near the Rescue area. That center would be on 146 acres and include capacity to board up to 300 horses and bleachers for special events for up to 250 spectators.

Read more from the Sacramento Business Journal here.

California Assembly Education Committee Explores the Future of Career Technical Education

Posted: Oct 2, 2017 | Posted by Kassy Perry | Comments Off on California Assembly Education Committee Explores the Future of Career Technical Education

Assembly Joint Committee, Business Leaders, Educators and Students Gather to Discuss Education and Job Opportunity through K-12 Career Technical Education

(Buena Park, CA) – GetREAL, a coalition of business, labor and educators who believe California schools should provide a balanced education combining academic studies and industry-relevant career technical education (CTE), applauds the California Assembly for holding a Joint Informational hearing to discuss the future of high school CTE in Buena Park on Monday, October 2.

“CTE is crucial to providing our high school students with an excellent education as well as a path forward to securing good jobs and economic security,” said Assemblymember Patrick O’Donnell, chair of the Assembly Committee on Education. “We need to not only ensure that CTE is well-funded for the long term, but we also must ensure the state is committed to smart implementation and accountability.”

The hearing will cover how the 3-year, $900 million California Career Technical Education Incentive Grant, established as part of the 2015-2016 state budget, has been implemented to expand and enhance district CTE programs. The hearing will also discuss the need for on-going funding to ensure students have access to CTE education that prepares them for well-paying careers in industries like agriculture, energy, manufacturing, construction and engineering, healthcare, hospitality and more.

“Working in the Building Trades allows more than 450,000 of our members – trained through our apprenticeship programs – to participate fully in our society, on a middle-class footing. It also provides a workforce that builds our public and private infrastructure and drives our economy. Some 58,000 of these construction workers are currently enrolled in apprenticeship programs, and I can’t think of a better form of pre-apprenticeship than the one that is provided through Career Technical Education in our public high schools. CTE needs to be recognized in our society and fully-funded in our schools,” concluded Robbie Hunter, president of the State Building and Construction Trades Council of California and co-chair of GetREAL.

There is no question that CTE programs are needed for our students and relevant to our workforce. According to the Bureau of Labor Statistics, 10 of the 20 fastest growing occupations in the U.S. require an associate’s degree or less, and 13 of the 20 occupations with the largest numbers of new jobs projected for 2018 require on-the-job training or an associate’s degree.

“Educators and students understand the great value of CTE, which is why more than 300 California high schools and local education agencies applied for and received grants to develop and grow their CTE programs,” said Assemblymember Sharon Quirk-Silva, chair of the Assembly Committee on Jobs, Economic Development, and the Economy. “Through CTE our schools are making education more relevant to students and setting them up to succeed after graduation. Going forward, we must continue this promise to our students.”

Research has shown that students participating in CTE are more engaged in their school work, perform better academically, have higher graduation rates and are more likely to enter the workforce and earn higher wages after leaving school.

“For many years, California moved away from CTE coursework and instead focused on a one-size-fits-all college-readiness track,” said Assemblymember Rocky Chávez, vice chair of the Assembly Committee on Education. “CTE does not preclude students from pursuing post-secondary education, rather it provides them with more choices and exposure to academics that lead to skilled jobs not requiring a four-year degree.”

CTE programs are aligned with state workforce needs and often partner directly with California industries to help ensure students’ best opportunity to gain meaningful employment when they leave school.

“California’s students are tomorrow’s workforce and our schools must prepare them to be both college and career ready,” said Dorothy Rothrock, president of the California Manufacturers and Technology Association and co-chair of GetREAL. “On behalf of our state’s manufacturers who are the engine of the state’s economy and provide middle class or better jobs for thousands of California workers, we believe it is imperative that the California Department of Education prioritize CTE by establishing policy drivers to ensure that CTE is built into the curriculum. Tomorrow’s jobs demand hands-on, relevant technical education on every middle and high school campus so that all California students are exposed to these life and career inspiring programs of study.”

The Assembly CTE hearing will include Assemblymembers O’Donnell, Quirk Silva, Chávez, McCarty and Muratsuchi, representing the Assembly Education Committee, Assembly Budget Subcommittee #2 on Education Finance, Assembly Select Committee on Career Technical Education and Building a 21st Century Workforce and Assembly Jobs, Economic Development & the Economy. Testimony will be provided by principals, teachers and students involved in CTE, as well as leaders of GetREAL, including the California Manufacturers and Technology Association and the State Building and Construction Trades Council of California.

The hearing will be held from 1:00pm to 3:00pm at Buena Park High School Performing Arts Center, 8833 Academy Drive, Buena Park.

Please click here to view the event’s live stream.

About GetREAL
Get R.E.A.L. (Relevance in Education And Learning) is a coalition of business, labor, agriculture, public safety, technology, health care, child advocates and educators who believe California schools should provide a balanced educational experience that includes academic studies and industry-relevant career technical education (CTE). www.getrealca.org

ROS1 cancer patients set out to create disease models

Posted: Aug 15, 2017 | Posted by Kassy Perry | Comments Off on ROS1 cancer patients set out to create disease models

Date: 8/15/17
Outlet: Fierce Biotech
Author: Nick Paul Taylor

A group of cancer patients with the ROS1 mutation has teamed up with a nonprofit and a precision medicine company to create disease models. The collaboration aims to drive forward research into treatments for cancers with the rare ROS1 gene mutation by gathering tissue samples from patients.

Patient group ROS1ders is organizing the project with the Addario Lung Cancer Medical Institute (ALCMI) and Champions Oncology. Members of the patient group will donate tissue taken during biopsies and surgeries. Champions will deploy its knowledge of creating patient-derived xenograft mouse models. And ALCMI will apply its experience from other geographically dispersed studies. cancer

“The study will use online enrollment methods developed by ALCMI for other research studies to enable participation by the global ROS1der community,” ALCMI President and COO Steven Young said in a statement.

This experience is important as the rareness of ROS1, which is found in multiple cancers but only in a few percent of patients, means the study will need to cast its net wide to collect samples. ALCMI, a nonprofit, will also run the study after working with ROS1ders to create the project. If the program succeeds, it will create mouse models and cell lines scientists can use to research new treatments for ROS1 cancers and better understand why tumors develop resistance to existing drugs.

Today, Pfizer’s Xalkori is the only drug approved by the FDA to specifically treat ROS1-positive tumors. Pfizer picked up the nod for the tyrosine kinase inhibitor in patients with ROS1-positive non-small cell lung cancer last year after putting it through a 50-patient, single-arm trial in the indication. The ROS1 approval came five years after the FDA cleared Xalkori for use in patients with anaplastic lymphoma kinase-positive tumors.

Pfizer and its collaborators are testing Xalkori in other ROS1 indications. And the Big Pharma is also working on next-generation ALK/ROS1 inhibitor lorlatinib, which picked up breakthrough status from the FDA earlier this year. Drugs from Daiichi Sankyo, Exelixis, Ignyta and Novartis are also being tested in ROS1-positive patients.

Read more from Fierce Biotech here.

Patient Engagement Is Mandatory at Our Table

Posted: Aug 9, 2017 | Posted by Kassy Perry | Comments Off on Patient Engagement Is Mandatory at Our Table

Date: 8/9/17
Outlet: American Journal of Managed Care
Author: Bonnie J. Addario and Daryl Pritchard, PhD

The Bonnie Addario Lung Cancer Foundation has developed a registry that can serve as a repository for data on patients with lung cancer—a means to empower patients and assist care providers to deliver personalized medicine in a patient-centered manner.

PRECISION MEDICINE ENTAILS the consideration of individual patient characteristics so that doctors, working directly with patients, can develop the best treatment plans for them as early in their care as possible. Treatment strategies should consider the whole person, including their age, medical history, ethnicity, biological characteristics, and other factors. This involves using technologies such as diagnostic tests, molecular profiling platforms, and therapies that directly target disease-causing genetic mutations.

I see the profound impact of precision medicine on patients every day. In 2006, my family and I founded the Bonnie J. Addario Lung Cancer Foundation (ALCF). We started another nonprofit, the Addario Lung Cancer Medical Institute (ALCMI), in 2008. ALCF works with patients to support research and to advocate for innovative lung cancer medicines and treatments. Both the ALCF and the ALCMI facilitate, fund, and drive research. We work with thousands of patients and their families around the globe, providing free education and support programs, connecting patients with doctors and clinical trials, and funding innovative research.

A lung cancer diagnosis is grim—only 18% of patients survive the disease. In the United States alone, 450 patients die from lung cancer every day. Lung cancer is the top cancer killer of men and women, killing almost twice as many women as any other type of cancer in the United States. Responsible for 26% of all cancer deaths, lung cancer is the second leading cause of all deaths in the country.1

With the rapid pace of developments in precision medicine, I am excited about the potential to shift the paradigm on how we diagnose and treat lung cancer and save lives. Furthermore, in this era of personalized medicine, we have an opportunity to vastly improve clinical trial design, thereby fostering an environment for innovation that can lead to the development of even more novel treatment strategies.

In 2016, for the third year in a row, targeted medicines and diagnostic tests accounted for more than 20% of the new molecular entities approved by the FDA (Figure 1).2 A recent study sponsored by the Personalized Medicine Coalition and conducted by Tufts University found that 42% of all medicines and 73% of cancer medicines in development are potential personalized medicines (Figure 2).3

Patient Input in Clinical Trial Design 

At the ALCF, we strongly believe that patients are our most important partner in clinical research. There would be no clinical research without patients participating in studies and donating their specimens. The traditional clinical trial design process overlooked patient input, which led to profound inefficiencies. Researchers often needed to scrap or redesign their clinical trials to address patient needs and circumstances. We have an opportunity at hand to vastly improve the process. Including patients in clinical trial design and giving them an opportunity to own their data provide a platform to streamline the process by getting it done right, arriving at the endpoints that matter most, and finding ways to most effectively improve health. We need processes for greater patient participation in clinical research. Now is the time to move from concept to practice, and lung cancer is a prime example of where it can work.

I advocate for the need to shift the way we look at clinical research. The current biomedical innovation paradigm, of discoveries moving from the bench to the patient, needs to shift its focus so that clinical researchers first take into consideration the patient and new discoveries move from the patient to the bench and then back to the patient. This will transform research to ensure it is patient driven and truly personalized.

Consider the example of Corey Wood. While attending the University of California, Berkeley, Corey was diagnosed with stage 4 lung cancer. A triathlete and marathon runner, she immediately began doing research about targeted therapies and genomic tests. Once her oncologists zeroed in on the rare genetic mutation that was responsible for Corey’s tumor, they treated her with targeted therapy. Corey now leads the normal life of a 25-year-old thanks to precision medicine. She is passionate about furthering research in the hopes that researchers can develop more effective targeted therapies. Corey owes her life to medical research.

Still, these new and more effective targeted treatments are not useful if we cannot get them to patients. Research and innovation in personalized medicine are surging, but its adoption into clinical practice is relatively slow. In most cases, doctors do not even discuss personalized medicine at the point of care. A recent public survey showed that only 4 of 10 people are aware of personalized medicine and just 11% of patients say their doctor has discussed or recommended personalized medicine treatment options to them.4

Another survey found that most healthcare organizations are unprepared to implement personalized medicine5 and some hospital systems may be placing implementation programs on hold.6 This lag is caused by novel challenges encountered by healthcare delivery systems as they adapt to the new treatments and practices associated with personalized care. What we lack are more patient-driven healthcare delivery approaches and processes that would ensure access to personalized medicine, including comprehensive genomic testing and multidisciplinary care.

Empowering patients to be more engaged in their healthcare through awareness programs and education on the promise of precision medicine would be a good start. The strategy should focus on:

  • Patient involvement in learning about the healthcare system
  • Improving patients’ engagement with their physicians
  • Shifting the control of individual genetic data to patients
  • Encouraging patient participation in the development of treatment guidelines and clinical pathways

Support for precision medicine and patient-centered research is strong, as indicated by several recent legislative initiatives and public policies. Patient-centered directives are included in the Affordable Care Act, and the recently passed 21st Century Cures Act focuses on involving patients in research and care design. The Precision Medicine Initiative, an effort to recruit 1 million volunteers to donate their genetic information for research aimed at finding more effective ways to improve health, and the Cancer Moonshot Initiative, an effort to cut in half the time it takes to discover new personalized cancer treatments, were authorized in the 21st Century Cures Act.

These policies underscore the importance of ensuring patients are receiving the appropriate diagnostic tests and personalized treatment. Lung cancer is not one-size-fits-all. Patients who feel they are not receiving the care they need can share the information with regulators by visiting www.mypatientrights.org.

Implementing Changes 

So, what can we do to advance personalized medicine? Patients must have a seat at the table to provide valuable data to drive faster cures. This includes ensuring that there is appropriate patient-driven trial design, clinical trial participation, diagnostic testing, endpoint determination, and data aggregation. We can change the clinical medicine research ecosystem and adapt it to be more patient-centered. This will bring new treatments forward on a shorter timeline.

We need to ensure that community hospitals and physicians are appropriately engaging patients and promoting personalized medicine. The ALCF is doing this by designating hospitals as Lung Cancer Community Centers of Excellence, where patients are assured of multidisciplinary care, tumor boards, genomic testing, and early screenings in these facilities. We can conduct clinical trials at community hospitals so that patients do not have to travel hundreds of miles to participate in one.

The ALCF just launched its patient-powered Lung Cancer Registry,7 a place to gather and store detailed information for patients with lung cancer. The registry directly involves patients in the collection of their information, which allows medical professionals to quickly analyze data to improve patient care. By creating a centralized registry, patients, healthcare professionals, researchers, the pharmaceutical industry, and policy makers have open access to information. Programs such as these will ensure that patients are empowered to educate themselves about their disease so they can receive the best, most personalized treatments possible.

Read more from the American Journal of Managed Care here.

Author Information

Bonnie J. Addario is chair, Bonnie J. Addario Lung Cancer Foundation, Addario Lung Cancer Medical Institute.

Daryl Pritchard, PhD, is vice president, Science Policy, Personalized Medicine Coalition.