Lung Cancer Patients to Help Medical Community Understand the Side Effects of Immunotherapy Treatment

Posted: Jan 18, 2018 | Posted by Kassy Perry

Study designed to help doctors better understand and educate patients with non-small cell lung cancer on what to expect when undergoing immunotherapy treatment.PatientRegistry

SAN CARLOS, Calif. (January 18, 2018) — The Lung Cancer Registry sponsored by the Bonnie J. Addario Lung Cancer Foundation (ALCF), the American Lung Association’s LUNG FORCE and the International Association for the Study of Lung Cancer (IASLC), is joining Adam Dicker, M.D., Ph.D. at Sidney Kimmel Cancer Center, Thomas Jefferson University and Heather Jim, Ph.D. at H. Lee Moffitt Cancer Center and Research Institute, Inc., in a study to learn about side effects of immunotherapy from patients with non-small cell lung cancer (NSCLC) who have undergone therapy with immune checkpoint inhibitors. In addition, the Society for Immunotherapy of Cancer (SITC) will join the collaboration as a project partner to maximize awareness of the registry and this research study to both researchers and patients.

Immune checkpoint inhibitors, a form of immunotherapy, have been shown to bring about durable remissions and prolonged survival for patients with NSCLC, but at the cost of toxicity that causes a range of side effects. The goal of this study is to gather information directly from patients and caregivers to better understand what side effects patients have experienced, when side effect symptoms began and how side effects have impacted the patients’ quality of life. Results from the study will give doctors a greater understanding of the how immune checkpoint inhibitor toxicities affect patients and allow them to better inform patients considering immunotherapy treatment for NSCLC.

“Nearly a quarter million Americans will be diagnosed with lung cancer this year,” said Bonnie J. Addario, 14-year lung cancer survivor and founder of the ALCF. “Immunotherapy, along with targeted therapy, has helped transform the treatment of lung cancer over the past decade. Gathering information from patients and passing that knowledge on to other lung cancer patients accurately and quickly is helping patients live longer, which is our goal.”

The study represents the first collaborative effort since the ALCF and the Lung Association joined forces with the IASLC in December 2017 to expand the Lung Cancer Patient Registry. The registry allows patients to contribute information that improves understanding of lung cancer treatments and enables researchers to use that information to improve patient care and outcomes.

“We’re inspired by the opportunity to put the Lung Cancer Patient Registry to innovative use,” said Harold P. Wimmer, National President and CEO of the American Lung Association. “The patient-provided data used in this new trial will allow us to gain knowledge from patients directly and better inform treatment.”

“Patient-reported outcomes (PRO’s) can help show clinical benefit in reducing disease related symptoms, provide more accurate estimates of toxicity, help model treatment costs and improve symptom management,” said Adam P. Dicker, M.D., PhD, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA . “These toxicities really do have costs, and it’s important for patients to know how much out-of-pocket costs they might incur.”

Lung cancer is the leading cause of cancer-related deaths in the U.S., accounting for one in four cancer deaths each year. The goal behind creating the registry is to speed and improve research by collecting information scientists can use in developing new treatments. In addition, the registry builds a bridge between patients and clinical trials’ researchers by enabling researchers to submit proposals to enter clinical trials into a database that patients can search.

“When all involved in lung cancer collaborate, patient outcomes improve,” said IASLC CEO Fred R. Hirsch, MD, PhD. “Information gathered in the study will be available to patients, their physicians, caregivers and to researchers evaluating the effectiveness of different treatment options.”

Patients with any form or stage of lung cancer, including patients with NSCLC who are interested in participating in the immunotherapy research study, can join the registry at www.lungcancerregistry.org. There, patients can opt-in to contribute their information, set their contact preferences and compare their experience with lung cancer with others. Patients can choose to receive information about research opportunities or other relevant news as part of their participation.


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 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 by 2023. The ALCF was established on March 1, 2006 as a 501c(3) nonprofit organization and has raised over $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. Follow us on Twitter @thealcf.

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

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

About the Society for Immunotherapy of Cancer
The Society for Immunotherapy of Cancer (SITC) is the world’s leading member-driven organization specifically dedicated to improving cancer patient outcomes by advancing the science and application of cancer immunotherapy. Established in 1984, SITC, a 501(c)(3) not-for-profit organization, serves scientists, clinicians, academicians, patients, patient advocates, government representatives and industry leaders from around the world. Through in-person and online educational programs that provide state-of-the-art continuing education for the entire cancer care team; open access peer-reviewed guidelines, articles and other resources; interactive, audience-specific online communities; and by fostering collaboration between expert researchers and oncology practitioners, SITC aims to one day make the word “cure” a reality for cancer patients everywhere.

 

 

Coordinated Care Leader EHS Medical Group Announces Management Changes

Posted: Jan 17, 2018 | Posted by Kassy Perry

 Cindy Ehnes brings regulatory expertise to Interim CEO role; New independent board of directors to be elected and commit to smooth claims runout

Pasadena, CA – EHS Medical Group today announced the appointment of nationally-respected health care executive Cindy Ehnes as Interim Chief Executive Officer, and the planned election of a new independent board of directors to focus on the company’s commitment to credibility, compliance and change.

For more than 20 years, physician-owned and operated EHS Medical Group has been a trusted provider of quality medical services to more than 600,000 members in communities in Northern California, the Central Valley, Inland Empire, Los Angeles and San Diego counties. EHS is one of the largest medical groups in the state with 6,509 physicians in its network.

“The hallmark of my career has been ensuring patient access to quality health care and protecting the patient-doctor relationship,” said Ehnes. “My core principle of ‘putting patients first’ is embodied by the EHS physicians who provide quality care in their medical practices and go the extra mile treating homeless patients at their non-profit in downtown Los Angeles. That dedication comes from the core and that mission must not be lost.”

In addition to its physician group practice, EHS Medical Group founded and operates the Downtown Coordinated Care Center (DC3) in Los Angeles. The groundbreaking non-profit organization is dedicated to connecting patients, many of whom are homeless with mental illness, to no-cost, quality medical care. The Complex Care Center within DC3 treats the whole person providing mental health services, substance use disorder treatment and wellness education while treating complex medical conditions. The innovative care delivered through DC3 is designed to keep patients out of emergency rooms and avoid delays in care that can result in poor outcomes and skyrocketing costs.

“Ms. Ehnes is well-qualified to lead EHS at this critical time,” said Carl Moy, M.D., EHS Board Chair. “We understand that to regain credibility with the industry and regulators, we must also elect independent board leadership. We are committed to that, a robust compliance regimen and claims runout. We owe our Medi-Cal patients our best efforts to remain of service to them.”

Ehnes joins EHS Medical Group after decades of dedication to the delivery of quality, patient-centered health care. From 2004 to 2011, Ehnes served as Director of the California Department of Managed Health Care (DMHC), where she oversaw health insurance services for 21 million Californians served by the state’s managed health care industry, and levied millions of dollars in fines on California’s largest health plans for violations of law. Prior to her move to California in 2002, Ehnes was known in the Colorado Department of Insurance as a strict, but fair, enforcer of consumer protections. More recently, she successfully helped to turn around a troubled Texas health plan, protecting its members’ access to quality care while restoring financial stability.

Background on recent DMHC action

In December 2017, due to alleged wrongdoing by EHS’ administrative services vendor, SynerMed, the DMHC ordered health plans contracting with EHS to terminate their contracts with EHS.

On November 3, upon learning of SynerMed’s alleged activities impacting access to care for their members, EHS Medical Group terminated its contract with SynerMed and initiated both an investigation of its activities and implemented patient-centered reforms including centering medical review decision-making in physicians reporting exclusively to EHS’ physician Board of Directors.

Ehnes will work with the DMHC, the California Department of Health Care Services and all health plans contracting with EHS Medical Group to ensure compliance with state regulations governing transition of Medi-Cal patients, as well as ensure that EHS physicians are properly reimbursed for patient care during the transition period. One of her first actions as interim CEO is the recruitment of new board members and to facilitate the planned election of a fully independent board of directors overseeing EHS’ operations.

“Everyone falls sometimes,” Ehnes continues. “The measure of a company is in how it stands back up with integrity. EHS’ leadership in providing comprehensive coordinated care will be revitalized by new management committed to implementing best standards of transparent, accountable, and compliant managed care practices.”

ALCF, the American Lung Association and the International Association for the Study of Lung Cancer Collaborate to Find a Cure for the World’s Deadliest Cancer

Posted: Jan 16, 2018 | Posted by Kassy Perry

The newly expanded Lung Cancer Patient Registry provides additional tools for lung cancer patients and researchers

SAN CARLOS, Calif. (January 10, 2018) — The Bonnie J. Addario Lung Cancer Foundation (ALCF) and the American Lung Association’s LUNG FORCE welcome the International Association for the Study of Lung Cancer (IASLC) as a new member of the Lung Cancer Patient Registry, a place to gather and store detailed patient information, providing a real world view of patient outcomes and treatment effectiveness. Lung cancer patients enter information anonymously into the Registry. Registered patients, their families, health care providers and researchers can access that information.

“Nearly a quarter million Americans will be diagnosed with lung cancer this year, and the Registry is the first of its kind, patient-driven resource where patients share their information about living with lung cancer to allow scientists and researchers the opportunity to learn from patients firsthand,” said Bonnie J. Addario, 14-year lung cancer survivor and founder of the ALCF.

The Registry includes the ability for registered researchers to query de-identified data in any combination of data elements using the research portal online search tool. Researchers interested in submitting proposals for placing clinical trials within the Registry may now submit a proposal.

“Anytime patients and doctors can collaborate more effectively, we improve the experience for both,” said Fred R. Hirsch, CEO of the IASLC. “As a global, multidisciplinary organization with a mission to conquer lung cancer, we look forward to the collaboration and the impact of the Lung Cancer Registry and are thrilled to join the partnership.”

This month, the Lung Cancer Registry will launch a study on the side effects of immunotherapy on non-small cell lung cancer (NSCLC) patients using data provided by patient participants. There is increasing awareness of the importance of collecting patient reported outcomes in oncology, especially long-term survivors whose toxicity is generally not reported in clinical trials. The findings will help educate other NSCLC patients and their families about side effects that are likely to occur and how they will affect the patients’ quality of life.

“Lung Cancer is a complex disease which requires a multi-pronged attack,” said Harold Wimmer, National President and CEO of the American Lung Association. “Continuing our collaboration with the Bonnie J. Addario Foundation, and joining forces with the International Association for the Study of Lung Cancer in support of the Lung Cancer Registry, will allow us to collectively have an even greater influence on lung cancer research and awareness.”

Patients with any form or stage of lung cancer can join the Registry at www.lungcancerregistry.org. Patients can opt-in to contribute their information, set their contact preferences and compare their lung cancer experience with others in The Registry. Patients can choose to receive information about research opportunities or other relevant news as part of their participation.


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 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 by 2023. The ALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised over $30 million for lung cancer research and related programs. Follow us on Twitter @thealcf.

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

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

 

Finding Help With Expensive Medications

Posted: Dec 21, 2017 | Posted by Kassy Perry

by Jeffrey Lewis

If you or someone you love is one of the millions of Americans with a chronic disease or a life-threatening condition, pharmaceutical manufacturers and their partners offer you a gift of hope this holiday season.

Pharmaceutical manufacturers are criticized as Scrooge or the Grinch in our country’s health care system. Elected officials and advocacy organizations want to blame somebody for rising Rx costs, and the most obvious target is the Big Pharma.

But in this blame game, very little attention is given to the help the pharmaceutical industry and its partners quietly provide to patients in need through a variety of programs.

Such programs are often based on the patient’s household income, but not always. Patients with no health insurance coverage are often the first group considered eligible. Likewise, those with one or more chronic or life-threatening conditions are a high priority.

If you fall into one of these categories, check out the Patient Assistance Programs (PAPs) found on individual pharmaceutical company websites or through Partnership for Prescription Assistance (www.pparx.org), the website created by PhRMA, the trade association representing pharmaceutical manufacturers, linking patients to more than 475 different assistance programs.

On most of these websites, you can be connected with a customer support team member who can help determine if you are eligible and get you enrolled. You will be asked to verify that you are insured or uninsured and, in some cases, provide proof of income. You may need your physician to validate your condition. But once approved, access to medication is almost immediate.

(Note: Patients enrolled in Medicare or Medicaid may not be eligible.)

Pharmaceutical manufacturers also offer co-pay assistance, in which the patient is offered help with the cost of medication co-payments. Some co-pay assistance programs do not limit who is eligible. And, it is important to know that some co-pay assistance programs will not help people on Medicare. Each program sets its own rules.

People searching for an online provider should check out www.RxAssist.org. This site was developed by AstraZeneca, a pharmaceutical manufacturer, with the sole purpose of helping people access needed medications. It is one of the best sites available.

The California Chronic Care Coalition (CCCC) launched the website www.mypatientrights.com in California and is taking it nationwide to help people who have been denied treatment or medicines, experienced delays or are dissatisfied with the decisions made by their health plan. Today, this program is operating in 17 states. It helps patients get the care or treatment they need if denied, or if their plans don’t cover their meds and force them to pay full price. The program is available in 17 states—check the website to see if your state has a program.

This holiday season, if you need help with your medications, you are not alone. Go to the websites cited throughout this article. They can help connect you with low-cost and free alternatives. It is worth your time to explore these options. Feel free to e-mail me with your questions.

Jeffrey Lewis, CEO of Legacy Health Endowment in Turlock, can be reached at jeffrey@legacyhealthendowment.org. The views expressed are his own.

 

Perry Communications Group Looking to Expand Team

Posted: Dec 21, 2017 | Posted by Kassy Perry

Perry Communications Group (PCG), a full service strategic communications firm based in Sacramento, is now hiring for two positions: Account Manager and Senior Account Executive.

Applicants for the Account Manager position should have minimum five years of experience in public affairs/public relations or related field.  Experience in media relations, grassroots advocacy campaigns, legislative office or agency experience preferred.  Understanding/strong interest in California current events, editorial trends, politics, public policy and thrives in a fast-paced, high-energy environment. Essential duties and responsibilities may include:

  • Primary role in ensuring PCG executes programs, including grassroots advocacy, social and digital media and public affairs campaigns on time, within budget and beyond clients’ expectations.
  • Serves as day-to-day client contact to drive program implementation.
  • Manages account teams and operates independently to execute deliverables.
  • Tracks team utilization numbers and expenses and makes recommendations to senior managers to remedy any outliers.
  • Anticipates client needs and troubleshoot issues.
  • Maintains regular client contact to ensure client satisfaction with account activity and to proactively notify senior managers of any issues and solutions to resolve them.
  • Works with senior management to prepare client agreements.

Applicants for the Senior Account Executive position should have minimum three to five years of experience in public affairs initiatives, public relations or related field.  Experience in grassroots advocacy campaigns, legislative office, agency experience and media relations preferred.  Ideal candidate will have an understanding and strong interest in California current events, editorial trends, politics, public policy and the ability to thrive in a fast-paced, high-energy environment.  Essential duties and responsibilities may include:

  • Provides hands-on staff support and implementation of specific tactics on one or more accounts.
    • Write attention-grabbing outreach/education materials, client correspondence, reporting documents, newsletter content, ad copy and more.
    • Support advocacy efforts by fostering relationships with stakeholders including health care advocates, legislators and staff, and consumers.
    • Researches media coverage and legislative activity and provides key takeaways and implications to senior managers.
    • Supports team with outreach and communications that advance coalition building.
    • Develop presentations including event recaps, project summaries, PowerPoint presentations.
    • Develop social media content and manage clients’ accounts.
    • Coordinate meetings with state and federal legislators.
    • Coordinates certain logistics for media and advocacy events.
    • Serves as an agency contact with external vendors.
    • Works with senior management to prepare client reports.
    • Stays informed of each client’s industry, shares information with team.

To apply please send cover letter and resume to jobs@perrycom.com

 

Sacramento Insiders Wary of Single-Payer’s Chances

Posted: Dec 8, 2017 | Posted by Kassy Perry

Date: 12/7
Outlet: Voice of San Diego
Author: Kelly Davis

SB 562, the bill to enact single-payer health care in California, spurred intense national interest and debate earlier this year as it made its way through the Legislature, and provoked protests when it was shelved. But at Tuesday’s Southern California State of Reform Health Policy conference in San Diego, single-payer came off as more of a distraction than a viable policy.

Democratic strategists at one panel talked about how single-payer has become a political tool — a “litmus test” that will be used against state legislators in next year’s election. Kassy Perry, president of Sacramento public relations firm Perry Communications, noted that the California Nurses Association — single-payer’s biggest champion — plans to run someone against Northern California Assemblyman Jim Wood, who’s repeatedly questioned the bill’s high price tag. Wood sits on the Assembly’s Select Committee on Healthcare Delivery, which held a hearing on SB 562 in October, with a second hearing scheduled for Monday.

“It is a faith-based policy that is being used to help define what it means to be a Democrat,” said panelist David Panush, president of California Health Policy Strategies.

“We already have a Democratic-controlled Legislature,” Perry said. “If the nurses union is running candidates, you’re going to see an even farther swinging left.”

In another panel featuring Republican Assemblywoman Marie Waldron and Assemblyman Randy Voepel, both of whom represent parts of San Diego County, single-payer took a backseat to issues like opioid addiction and access to care; neither Waldron nor Voepel, who both sit on health care committees, condemned the bill, though Voepel, a fan of colorful analogies, compared single-payer to a burrito.

“On one end of the burrito, you have the doctor group, the benefits, the whole infrastructure of healthcare,” he said. “The other end is funding. You squeeze one end and the other pops out. How to squeeze the burrito — that’s what they’re dealing with in Sacramento.”

Voepel said single-payer could work — if it included the flexibility to purchase supplemental care and if funding existed.

Other topics the panels discussed:

  • Aetna/CVS merger: Earlier this week, health insurer Aetna announced a merger with CVS Health. On the Dem side, Jim Gross, a partner at Sacramento-based law firm Nielsen Merksamer, described the move as an “unmitigated disaster” for California that won’t result in cost-savings for consumers, while Voepel found Aetna’s plan to create “health hubs” at CVS pharmacies a promising model.
  • Opioid crisis: Both panels agreed that California’s well-positioned to tackle opioid addiction, though panelists pointed out that we haven’t seen the worst of it. “California is light years ahead,” Waldron said, “but there’s so much work to do.”
  • Health care costs: One way of bringing down costs, Waldron said, was to strengthen links between health care and social services. “We pay a lot more and our results are a lot less than a lot of other countries,” she said.

Read more from Voice of San Diego here.

Holiday Program Brings Hope Home to Lung Cancer Patients

Posted: Dec 7, 2017 | Posted by Kassy Perry

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/

###

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.

The Benefits of Joining a Non-Profit Board as a YP

Posted: Dec 1, 2017 | Posted by Kassy Perry

By Katelyn Downey

Katelyn DowneyLooking to expand your career, meet new people AND give back to your community? Look no further than joining a nonprofit board. A nonprofit’s Board of Directors is the governing body of a nonprofit, and responsible for many things including general oversight of the organization and ensuring the nonprofit has adequate resources to advance its mission.

Joining a board is both personally and professionally rewarding. Here are five reasons why YP’s should consider joining a board:

Diversify your skill set

Yes, you’ll be able to showcase your specialized skill set as a board member, but you’ll also be required to do more. Board members are required to review financial statements, fundraise, communicate the organization’s message, manage volunteers and provide general oversight for the nonprofit. Serving on a board allows you to be well-rounded in all the areas needed to make a successful organization run.

Learn how to ask for money – or at least a favor

Yes, asking people for money can be intimidating at first. Unless you’re in sales, you might not be well-versed in the art of closing a deal. Serving on a board allows you to share all the wonderful things the organization is doing for the community, and how others can help. Step out of your comfort zone and learn how to build relationships, make the ask and get the donation or the favor for the betterment of your community.

Expose yourself to people in different industries

You all share one common interest based on the fact you’re on the board of this organization, but you might share little else. Serving on a board is the perfect chance to expand your network beyond your industry. You’ll also get to mix and mingle with community leaders, CEOs of companies, and people in the upper level of their careers, gaining valuable insight into what it takes to get there (and potentially meeting a future employer).

Opportunity to REALLY take a leadership role

Depending on the board you’ll be a part of, it may be an unpaid opportunity. In this case, you’ll be able to use the asset you have the most of: Time. Take the opportunity to chair a committee, lead an event, or prep the organization for an audit. Nonprofits are often looking for all the help they can get, and you can lend a hand in a way you might not be able to at your job.

Do good for your community

It feels good to do good. And maybe you don’t get enough of that feeling at your day job – or any at all. Nonprofit experience allows you to create tangible change in your community. And nothing can beat that!

Bonus: You’re a Millennial!

We get it, being a millennial isn’t always the label you look forward to adhering to most. However, joining a nonprofit board is an opportunity to lean into it. Take the time to help organizations add a young, diverse population to their board membership. Your opinions are valuable, and will more often than not take them to the next level.

Sound like something you’re interested in? The next step is finding an organization whose mission you believe in. Got one? Great. Reach out to them and see if they have openings on their board. Interested in serving on a board, but don’t have one in mind? Check available board positions online, connect with a board recruiter, or ask around your network.

When researching opportunities, make sure to ask about financial commitments, time commitments, and what type of skill set they’re looking for. Similar to finding the perfect job, make sure the group you join is a good fit for you. Once you join, make it count!

Katelyn Downey sits on the communications committee for Metro Edge and is an account manager at Perry Communications Group.

Outsmarting Lung Cancer

Posted: Nov 21, 2017 | Posted by Kassy Perry

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/

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National Collegiate Equestrian Association 2017 National Champions Honored at White House

Posted: Nov 21, 2017 | Posted by Kassy Perry

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