Archive for the ‘Clients In The News’ Category

VA works to raise awareness for lung cancer screening in Veterans

Posted: Jul 17, 2020 | Posted by Kassy Perry | Comments Off on VA works to raise awareness for lung cancer screening in Veterans

July 17, 2020
U.S. Department of Veterans Affairs
By Erica Sprey

Navy Veteran Jim Pantelas has spent the last 15 years working to fund new lung cancer research, combat patient stigma, and improve care for lung cancer patients. His mission is personal: He is a survivor of stage 3 lung cancer, with stage 4 lymph node involvement.

Working together with the Lung Cancer Alliance, now part of the GO2 Foundation for Lung Cancer, Pantelas frequently finds himself on Capitol Hill lobbying to increase funding for lung cancer research and early detection programs.

“Early screening is the single biggest thing that has hit lung cancer in forever. You can talk all you want about immunotherapies that are available for lung cancer, and they are wonderful. But they only treat 15% of the lung cancer population,” says Pantelas.

With lung cancer screening programs, physicians are catching more cancer earlier, when it is still treatable, says Pantelas. Historically, he notes, most lung cancers were caught at stage 4, when treatment options were limited.

Veterans are at greater risk of lung cancer

Some 900,000 Veterans are at risk of developing lung cancer due to older age, a history of smoking, and environmental exposures during or after military service. Each year, VA diagnoses 7,700 Veterans with lung cancer.

“In my era, Agent Orange was a given,” says Pantelas. “If you served a day in Vietnam and you got lung cancer, it was [presumed to be related to Agent Orange]. But it took 20 years to get there.”

thumbnailNavy Veteran Jim Pantelas is a patient advocate and 15-year lung cancer survivor. (Photo courtesy of CureToday.com)

VA has partnered with the GO2 Foundation to increase awareness about lung cancer screening and to improve outcomes for Veterans affected by lung cancer. The partnership will allow VA to share Veteran-centric information and resources via the foundation’s 750 Screening Centers of Excellence.

The GO2 Foundation developed a set of criteria for assessing screening programs in the earliest days of lung cancer screening, according to Pantelas. They created a Center of Excellence designation for high-quality screening programs, and developed a set of guidelines to ensure that lung cancer screening was practiced in a safe, precise, and equitable way, calibrating low-dose computed tomography (CT) scanners to uniform levels.

“The VA-GO2 Foundation partnership will help expand the array of services that are currently available within VA,”said VA Secretary Robert Wilkie in a press release. “It will also increase public awareness about Veteran-specific conditions that place Veterans at greater risk for lung cancer.”

The GO2 Foundation was founded by patients and survivors to help transform the lives of people who have survived cancer. An important mission of the foundation is to increase funding for public and private lung cancer research.

Early lung cancer screening programs

Laurie Fenton, president and CEO of the GO2 Foundation, has been working to increase access to lung screening for Veterans for more than a decade. In 2012, her work with the former Under Secretary of Health Robert Petzel led to the establishment of the VA Lung Cancer Screening Demonstration Project.

Based on the U.S. Preventive Services Task Force recommendations on annual lung cancer screening, the project examined the feasibility of starting a screening program in a large integrated health care system, like VA.

In 2017, the project concluded that lung screening using low-dose CT scans is an important component of care for Veterans at high risk of lung cancer. The researchers noted that wide-spread implementation in a clinical setting would require further study.

Veterans often hold misconceptions about the benefits of screening for lung cancer, according to research. VA investigators in Seattle conducted a study that examined Veterans’ perceptions about smoking and cancer screening. Nearly half of respondents incorrectly said that lung screening could reduce their risk of getting lung cancer.

This research underscores the need for well-defined messaging for Veterans on the benefits of screening for early detection of lung cancer, said the researchers. “Our results illustrate just how wide a gap exists between the expectations and the reality of lung cancer screening benefits among some groups of current smokers.”

Increasing Veteran access to lung screening

Growing out of earlier work, VA clinicians developed the VA Partnership to Increase Access to Lung Screening (VA-PALS) demonstration project. The program is an enterprise wide initiative that entails a collaboration between the VA Office of Rural Health, Bristol-Myers Squibb Foundation, and the International Early Lung Cancer Action Program.

Today, VA-PALS encompasses 10 VA medical centers across the country and is standing up a cloud-based management system to track Veterans who have undergone lung cancer screening.

Dr. Drew Moghanaki is a VA lung cancer specialist and section chief of radiation oncology at the Atlanta VA Health Care System. He is the principle investigator for VA-PALS, and has been an early collaborator with the GO2 Foundation.

There are a number of ways that the VA partnership with the GO2 Foundation can help Veterans, according to Moghanaki.

“The GO2 Foundation can help VA deliver its message about the importance of lung screening to Veterans throughout the U.S.,” he says. “This can be done via co-branded messaging and by committing GO2 resources to host public information about VA’s commitment to lung cancer on their website.”

Education will also play a major role in the GO2-VA collaboration, says Moghanaki. The GO2 Foundation is prepared to invite VA clinicians to participate in their online learning networks and educational webinars. Together with VA-PALS, GO2 is planning to host a virtual workshop for VA clinicians in the fall.

The GO2 Foundation is also ready to work with the VA Office of Community Care to help Veterans identify high-quality screening centers if they choose to seek care in the community.

Lung cancer is the leading cause of cancer-related deaths in the U.S., according to the American Cancer Society. One reason is that patients with early stage lung cancer don’t typically experience significant signs of disease. In Pantelas’ case, his lung cancer was diagnosed by a rheumatologist at an advanced stage, because he was experiencing bone and joint pain.

Early lung screening can be a game changer, says Pantelas. “We have 140,000 deaths a year from lung cancer, and we are really happy that it’s down into the 140s,” he notes. “Three years ago, it was 157,000 deaths. A big part of that is earlier detection through screening programs.”

Chris Smith: Santa Rosa man kept his promises to the fellow lung cancer patient he’d loved

Posted: Feb 8, 2020 | Posted by Kassy Perry | Comments Off on Chris Smith: Santa Rosa man kept his promises to the fellow lung cancer patient he’d loved

By Chris Smith
The Press Democrat
February 8, 2020

Don Stranathan has died.

The Santa Rosan passed having kept his promises to the woman he loved eternally though not for very long, and to everyone impacted by the nation’s deadliest cancer.

In 2012, the PD shared the story of how Don Stranathan connected with a New York woman, Penny Blume, on an online health forum for people dealing with lung cancer. Both had it, stage IV.

Stranathan, then 60, and Blume, then 50, clicked. Both of them divorced parents of two, they communicated online, then by phone.

“For the next few months,” Stranathan once shared, “we chatted every day.” Another time he recalled, “We weren’t looking for a relationship, but we surprised each other.”

Early in 2013, Blume accepted an invitation to meet Stranathan in California. They would soon be inseparable.

“We laugh a lot,” Stranathan said. “The fact is, we are going through this together.”

And said Blume of the new man in her life, “Don’s a really good person, just a really nice guy. He’s very supportive and gives good back rubs.”

In 2013 Stranathan’s lung cancer was fairly stable but Blume’s worsened. She moved to Santa Rosa in October of that year so that she could be with Stranathan, and he could assist her.

They went onto “Good Morning America” to talk of their coming together and their determination to attract more research into lung cancer, which each year in the U.S. kills more people than breast cancer, prostate cancer and colon cancer combined.

Blume was 51 when she died in January of 2014.

The heartbroken Stranathan said not long afterward, “My last promises to Penny were that I would continue to live life to the fullest and advocate for lung cancer research and awareness.”

And he did.

Stranathan made himself one of the nation’s most knowledgeable and active advocates of improved care for lung cancer and of funding for expanded research. He also made himself freely available to others who struggled with the disease and its stigma as a self-inflicted consequence of smoking.

“What a lot of people aren’t aware of is that more women die of lung cancer than breast cancer,” he told the PD late in 2014. “I can think of six women off the top of my head in this county who have stage IV lung cancer. None of them ever smoked.”

Stranathan filled his life with patient advocacy as he applied much time and great passion to researching, advising and counseling.

“He would stay on the phone for hours with complete strangers,” said Bonnie Addario, co-founder of the GO2 Foundation for Lung Cancer. “There was nobody that he didn’t drop everything for.

“He was really an iconic lung cancer advocate.”

Kim Norris, president and founder of the Lung Cancer Foundation of America, said Stranathan was invaluable as a champion of the message that lung cancer deserves concern and funding commensurate with the havoc it wreaks.

“Don,” Norris said, “was the advocate who was out there spreading the word.”

When he died Feb. 1 at age 67, Stranathan had lived with nonsmall-cell lung cancer for nearly 11 years.

He passed, no doubt, with Penny Blume in his heart and a sense of satisfaction that he’d fulfilled his promises to her.

He once said, “We both understood going into this relationship that neither of us knew how much time we had.

“When you think about it, though, does anyone?”

Services for him will be at 1:30 p.m. Wednesday at the Center for Spiritual Living in Santa Rosa.

His son, Michael Stranathan, and daughter Christa Chamberlain Dwight and the rest of his family suggest memorial donations to the GO2 Foundation, the Chris Draft Family Foundation or the LUNGevity Foundation.

FOR YOUR SWEETIE: A true Sonoma County Cupid’s Day tradition returns Friday, when fancily decked-out Santa Rosa High students will fan out in clusters to deliver singing valentines.

For 50 bucks, these stunningly trained and talented kids will go to where your beloved is to serenade her or him and present a card and a rose.

The deadline for ordering a singing telegram at srhschoral.org is 5 p.m. Wednesday.

Proceeds will support the SRHS choral department.

$500,000 Research Grant to Combat Cancer Treatment Resistance Awarded by ALK Positive and GO2 Foundation

Posted: Feb 6, 2020 | Posted by Kassy Perry | Comments Off on $500,000 Research Grant to Combat Cancer Treatment Resistance Awarded by ALK Positive and GO2 Foundation

SAN CARLOS, Calif. and WASHINGTONFeb. 6, 2020 /PRNewswire/ — ALK Positive (a patient-led group of 1,900+ lung cancer patients and caregivers in 50+ countries) and GOFoundation for Lung Cancer (a global lung cancer advocacy and education organization) are awarding a two-year, $500,000 Research Collaboration Grant to two renowned lung cancer researchers dedicated to overcoming treatment resistance.

This grant funds research to help break down barriers to successful lung cancer treatment and to identify new treatments. A 2019 partnership between ALK Positive and the GO2 Foundation raised the funds for this grant.

Patients with ALK+ lung cancer benefit from targeted therapy medications but drug resistance ultimately limits this benefit: most patients develop progressive disease within one to three years of treatment.

Dr. Trever Bivona, associate professor of medicine at the University of California – San Francisco, and Dr. Christine Lovly, associate professor of medicine, Vanderbilt University Medical Center, are receiving the grant for their project, “Transforming ALK+ lung cancer into a chronic or curable condition by combating drug resistance.” Drs. Bivona and Lovly are recognized lung cancer experts. The study will explore if new combinations of targeted therapies can delay or prevent treatment resistance.

“ALK Positive is grateful to GO2 Foundation for their efforts in coordinating this partnership. The fundraising efforts of the ALK Positive members and their supporters have been extraordinary, and we are hopeful this project will make significant strides in accomplishing our mission to ‘improve the life expectancy and quality of life for all ALK-positive patients worldwide’,” said Gina Hollenbeck, the group’s president.

“One of the greatest barriers to surviving lung cancer is treatment resistance. This grant will help overcome this significant obstacle, give patients hope, and help to achieve the goal of making lung cancer a chronically-managed disease,” said Bonnie J. Addario, co-founder and board chair of the GO2 Foundation. “Lung cancer is truly leading the way to make research personal. This is an example of how patients, advocates and researchers are putting their heads together to create new, game-changing research.”

“I am honored to work alongside the ALK Positive community on this effort to accelerate our understanding of resistance and to find new ways to fight it,” said Bivona. “At a time when we are making great strides in the treatment of lung cancer, yet research funding is lacking, we are deeply appreciative of this funding from members of ALK Positive,” said Lovly.


About ALK Positive
ALK Positive – a group of highly motivated, passionate, and dedicated ALK-positive patients and their caregivers – wants to drive change in the ALK lung cancer space. ALK Positive members are committed to raising funds for research to increase ALK-positive lung cancer patients’ survivorship. The three tenets by which they live are information, support, and empathy. ALK Positive members uphold these by providing information about ALK-positive lung cancer to each other; supporting one another around the globe to improve members’ physical and emotional well-being; and having empathy with each other because they share their lung cancer journey. For more information about ALK Positive, or to make a donation to help fund the ALK Positive Lung Cancer Transformational Research Awards, please visit www.alkpositive.org

About GO2 Foundation for Lung Cancer
Founded by patients and survivors, GO2 Foundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation and Lung Cancer Alliance), transforms survivorship as the world’s leading organization dedicated to saving, extending, and improving the lives of those vulnerable, at risk, and diagnosed with lung cancer. We work to change the reality of living with lung cancer by ending stigma, increasing public and private research funding, and ensuring access to care.

Overcoming patient transportation barriers to care

Posted: Jan 14, 2020 | Posted by Kassy Perry | Comments Off on Overcoming patient transportation barriers to care

Physicians Practice
By Steph Weber
January 14, 2020

According to the American Hospital Association (AHA), transportation challenges prevent a staggering 3.6 million Americans from receiving medical care each year. A 2019 survey by Kaiser Permanente found that one-third of Americans frequently or occasionally experience stress over their families’ transportation needs.

While access to a reliable personal vehicle or public transit system can affect virtually any patient at any point in time, it can be persistently problematic for the roughly one-in-five patients residing in rural areas who experience commutes 17 minutes longer and 10.5 miles farther than their urban and suburban counterparts. Associated travel expenses pose additional barriers, especially for those with mobility-limiting conditions requiring specialized vehicles or with chronic conditions requiring repeated visits.

When lack of transportation leads to missed, canceled, or delayed appointments, the impact on patients and providers is significant, interrupting continuity of care and compromising patient outcomes as well as the successful management of complex comorbidities. The rise in such scenarios has prompted the creation and implementation of targeted solutions. “Addressing social needs [like transportation] is the next frontier in healthcare,” says Edward Lee, MD, executive vice president of information technology and chief information officer at the Permanente Federation in Oakland, Calif. “An individual’s social needs can have a huge impact on their health; physicians are often the first professionals working in a community to identify those needs.”

Social determinants of health (SDOH)—where patients are born, live, learn, and work—are increasingly being studied as a way to stymie existing health inequities, improve access to both acute and preventive care, and address modifiable risk factors. According to the Centers for Disease Control and Prevention (CDC), genetic, biologic, and personal behaviors account for just 25 per cent of an individual’s wellness. The remaining 75 per cent is attributed to SDOH factors like housing, safe neighborhoods, food insecurity, and access to transportation and healthcare services.

The true cost of missed appointments

When patients cannot attend appointments, regardless of the reason, it creates a cascade of consequences for all involved. An interruption in the continuity of care and access to critical support services can leave patients struggling to independently maintain treatment regimens and make healthful decisions that advance their care plans.

According to a 2018 Journal of Primary Care and Community Health study, patients with a history of missed appointments are nearly five times more likely to miss subsequent appointments. Another study determined that patients with higher rates of no-shows are significantly more likely to have incomplete preventive cancer screenings, worse chronic disease control, and increased rates of acute care utilization for hospitalization and emergency department visits, adding to healthcare costs in an already overburdened system. Missed appointments are a risk factor for all-cause mortality, according to a 2019 BMC Medicine study, with mental health patients experiencing an eightfold increase in risk.

Healthcare organizations and providers feel the strain too. In the current healthcare environment where physician shortages are rampant, last-minute scheduling changes may result in unfilled timeslots, underutilization of valuable finite resources, and increased wait times for other patients. A secondary effect is the potential loss of revenues. While it is difficult to determine the economic repercussions, one estimate suggests that no-shows or last-minute cancellations result in an industry loss of $150 billion per year, compounding at an average rate of $200 per unused timeslot. When patient visits are infrequent or sporadic, quality metrics can suffer, resulting in financial penalties under emerging value-based reimbursement models.

Although several studies have reported no-show rates from three per cent up to 80 per cent, they vary broadly among providers and even within an institution’s own departments. “No-show rates average 15 percent for appointments across our system and around 50 per cent for behavioral health appointments,” says Lisa Brandt, MBA, BS, RDH, vice president of population health for Indiana University Health Physicians group in Indianapolis, Ind.

When care managers contacted emergency room patients post-discharge to ensure care plan adherence, a common theme quickly became evident. “We would often find out they had no social support to bring them to their appointments,” says Brandt. When patients inevitably became ill or required further treatment, they would resort to visiting the emergency room instead.

Ride-sharing partnerships 

Missed appointments due to a lack of transportation also tend to point to a patient’s overall socioeconomic status. Patients residing in communities with poor SDOH factors tend to face more barriers to care including less social support, fewer financial resources, and greater travel distances. “Lack of transportation is a significant barrier when accessing care, especially for patients that are low-income, disabled and/or suffer from a chronic condition,” says Liz Helms, president and CEO of the California Chronic Care Coalition in Sacramento.

Although Medicaid frequently covers non-emergency medical transportation (NEMT) services, prior authorization requirements and varying coverage from state to state can undermine the program’s reach. If patients are forced to pay out-of-pocket for NEMT services, the expense may simply be too great. “These added costs are especially significant for patients who need to receive treatment at a certified clinic only a couple of minutes away from their home, but are [sometimes sent] to [centers in] other states their insurance will cover,” says Helms. “Costs include time away from work, accommodations, paying for a professional caregiver or having a family member provide transportation.”

2013 Journal of Community Health study found that transportation challenges disproportionately affect the elderly, children, minorities, and veterans, as well as patients who are low income, less educated, or chronically ill. To bridge the gap for the most vulnerable populations, Indiana University Health recently formed new ride-sharing partnerships to provide transportation to eligible patients. The initial focus is on the elderly, those with chronic diseases such as heart failure and diabetes, and Medicare Advantage and ACO health plan participants. High utilizers of emergency services and patients without social support or who have SDOH needs are also included.

“To avoid patients paying out of pocket, we are paying for transportation services if they meet our regulatory criteria and have financial need, based on information provided to our care managers and social workers,” says Brandt. While the program is still in its early stages, feedback has been positive and promising for reducing total no-shows. At an average per ride cost of less than $30, it’s significantly less than an emergency room visit and may likely prove more sustainable.

K.C. Kanaan, cofounder and CEO of Envoy America, a senior transportation provider headquartered in Tempe, AZ, has seen a shift in client demographics and needs. “Even though most of our marketing is focused on serving the elderly, we have clients as young as 20 years old,” says Kanaan, who estimates the organization has provided more than 100,000 NEMT rides through its network of medical partners which includes the Mayo Clinic as well as dentists, rehabilitation facilities, and kidney dialysis centers. His employees have also assisted parents traveling with young children, who may have otherwise struggled to find a way to easily and safely commute as a family.

Although formal data isn’t yet available for Envoy America’s program, demand has grown. “We estimate that our services are making a difference, because we are seeing our business grow,” says Kanaan. “Anecdotally, we have heard from some of our partners that our services help them in their overall goal to lower readmission rates.”

Once the impact of ride-sharing programs can be more fully measured, it’s possible the scope could be expanded into a modern version of the house call. “In the future, it could be used to send a healthcare provider to the patient’s home if that is a more efficient and cost-effective option,” says Brandt.

Telehealth and integrated solutions 

When physical commutes prove challenging, mobile may be the answer, especially now that cellphone ownership has reached an all-time high. According to Pew Research Center, 96 per cent of Americans own a cellphone and 81 per cent own a smartphone. Tapping into that technology can keep providers and patients connected for follow-ups, and perhaps even more importantly, create opportunities to access first-line care.

“Because many people have time and transportation barriers to their initial visit with a medical provider, virtual healthcare options speed time to initial evaluation,” says Blake McKinney, MD, cofounder and chief medical officer at CirrusMD, a text-based virtual care platform located in Denver, Colo. “[CirrusMD is] instantly available from any mobile or web device.”

Through partnerships with employers, payers, and integrated delivery networks, the service is offered at no cost to most patients, completely bypassing three of the most commonly cited barriers to care – transportation, distance, and money. Users of the platform, including more than 200,000 veterans, connect with a physician in less than 60 seconds. Avoidable emergency room visits have been reduced by as much as 40 per cent and utilization rates are three times that of national telehealth averages.

“Management of chronic diseases, such as heart failure, require a high touch clinical workflow. Currently, most hospitals and medical groups have programs staffed by highly trained nurse practitioners following evidence-based protocols who stay in touch and manage patients over the telephone – which these days means voicemail and can lead to many lost conversations,” says McKinney. “We live in a world where everyone texts, so it makes sense to use medical-grade texting capabilities for the management of chronic disease.”

Other telehealth services like patient portals and secure messaging partially circumvent the transportation gap and have slowly gained traction alongside EHRs. Unfortunately, rollouts are often clunky and interfaces not particularly intuitive, essentially trading one barrier for another. The key, experts say, is to offer patients accessible resources at every turn.

That’s exactly what Kaiser Permanente hopes to accomplish through their Thrive Local initiative, a comprehensive social health network designed to connect patients with SDOH needs to appropriate services. “A network of community resources will be integrated into Kaiser Permanente’s electronic health record. By doing so, our members with unmet social needs will be more efficiently connected to community services by our clinicians and staff,” says Lee.

Ultimately, the most effective solutions must focus on ease of use and streamlined access to providers. “Some believe that doctors need a bunch of information inputted before they can talk to you – that’s the paradigm of the office clipboard, right?” says McKinney. “What I prefer, and what I believe patients prefer, is to just let us connect and communicate as quickly and as personally as possible. A doctor you can communicate with is more relevant to your care than a doctor you have to wait weeks to see.”

Advances in Lung Cancer Treatment Drops U.S. Cancer Deaths

Posted: Jan 8, 2020 | Posted by Kassy Perry | Comments Off on Advances in Lung Cancer Treatment Drops U.S. Cancer Deaths

GO2 Foundation for Lung Cancer points to targeted treatments and early screenings

(SAN CARLOS, Calif. and WASHINGTON) — Today’s report concerning improvements in cancer mortality is welcomed news. The recently released Cancer Statistics 2020 report shows that the decline in lung cancer deaths is driving the decrease in mortality rates for cancer overall. This is a tremendous development for anyone who is at-risk or managing a cancer diagnosis.

“This report validates what we have been advocating for many years. Lung cancer is a disease that has needed a better coordinated plan of action linking prevention to early detection to better treatment options and survivorship care. This comprehensive strategy is what will – and is – saving lives for our community,” said Laurie Fenton Ambrose, co-founder, president and CEO of GO2 Foundation for Lung Cancer. “GO2 Foundation is proud to continue to help bring responsible screening and personalized treatment into community settings across the country.”

GO2 Foundation’s focus on a coordinated plan of action linking prevention to early detection and targeted treatment options is helping save lives across the country. GO2 Foundation brings this screening and personalized treatment into community settings across the country through its Centers of Excellence program in more than 700 medical centers in the U.S.

The Centers of Excellence take a coordinated approach to lung cancer treatment including responsible screening, tumor genetic testing that allows for more targeted treatments and personalized clinical trial and treatment navigation.

“We are pleased to see the gains that GOFoundation has been working toward through its coordinated, patient-centered approach to lung cancer detection and treatment, reducing of lung cancer deaths in the U.S.,” said Dr. Geoffrey Oxnard, M.D. president of the GOFoundation’s Scientific Leadership Board and associate professor of Medicine at the Dana-Farber Cancer Institute and Harvard Medical School. “GOFoundation’s focus on implementing responsible screening and care in communities and identifying genetic changes in lung cancer are leading the way to more targeted treatments and better patient outcomes as evidenced in recent cancer statistic reports.”

In addition, GO2 Foundation also provides personalized clinical trial and treatment navigation for those diagnosed – and educational information about screening and where to be screened responsibly for the millions at risk.

Healthcare providers interested in joining GO2 Foundation’s Centers of Excellence network should contact us at info@go2foundation.org. Anyone with questions about risk and screening or questions about treatment should contact our helpline services (800-298-2436 or support@go2foundation.org).


About GO2 Foundation for Lung Cancer
Founded by patients and survivors, GOFoundation for Lung Cancer (formerly the Bonnie J. Addario Lung Cancer Foundation and Lung Cancer Alliance), transforms survivorship as the world’s leading organization dedicated to saving, extending, and improving the lives of those vulnerable, at risk, and diagnosed with lung cancer. We work to change the reality of living with lung cancer by ending stigma, increasing public and private research funding, and ensuring access to care.

California to Expand Innovative Adult Sickle Cell Disease Clinics Statewide

Posted: Nov 25, 2019 | Posted by Kassy Perry | Comments Off on California to Expand Innovative Adult Sickle Cell Disease Clinics Statewide

Governor and legislature commit $15 million in funding to historically underserved Californians

LOS ANGELES – Today California advanced care for people with sickle cell disease (SCD) by launching a new initiative to establish a network of clinics for adults with SCD statewide, expanding services for those impacted by this chronic, debilitating disease.

The launch marks the grand opening of a new clinic site at the MLK Jr. Outpatient Center in Los Angeles. The Los Angeles County Board of Supervisors named the new clinic after Jeffrey Smith, the son of Gil Smith, Founding Mayor of the City of Carson, who died from SCD complications in 1982 at the age of 23.  These milestones come three years after the Los Angeles County Department of Health Services first opened the adult SCD clinic at MLK Jr. Outpatient Center in Los Angeles, with its partners the Sickle Cell Disease Foundation (SCDF) and the Center for Inherited Blood Disorders (CIBD).

Now with a commitment of $15 million, Californians across the state with SCD will finally receive the quality health care they deserve.

“We have waited too long to address the poor health outcomes and premature deaths suffered by individuals with Sickle Cell Disease in California,” said Diane Nugent, MD, president and medical director of the Center for Inherited Blood Disorders. “In the United States, life expectancy for individuals with Sickle Cell Disease is 61 years. In the United Kingdom, it’s 70 years. In the State of California, it’s a shocking 43 years. The program made possible by this funding due to the leadership of Assemblymember Gipson will give new hope to and extend the lives of our vulnerable and underserved Californians who suffer from this terrible disease.”

For the first time in California’s history, the governor committed $15 million statewide for sickle cell adult treatment programs statewide. In addition, this program will help train clinicians to quickly recognize and properly treat the many complications faced by adults with this complex and debilitating disorder so they can receive the best care possible. Decades of inadequate funding for California adults living with SCD resulted in this underserved community dying at younger ages and at higher rates. Californians with SCD have higher incidents of emergency room visits and hospitalizations than patients in other states. This program marks the first time California has provided significant funding for SCD, which is the world’s most common genetic disease affecting approximately 100,000 in the U.S. alone.

“Given that Jeffrey’s story was the impetus that drove me to introduce this budget proposal, it is fitting that the first of the clinics be named in his honor” said Assemblymember Mike Gipson. “Today, the majority of adults with SCD are forced to obtain care in hospital emergency departments and other non-SCD specialty settings. The Jeffrey Smith Sickle Cell Adult Center will be a center of excellence that understands adult patient’s unique needs and provide them with a quality of life that we would all want for ourselves. Moreover, the comprehensive outpatient center will avoid increased hospitalization costs for a Medi-Cal population.”

The new funding will help create a statewide network of regional adult SCD clinics modeled after the MLK Jr clinic. Developed within the existing health system infrastructures, the network will serve counties where the largest numbers of adults with SCD live, including Los Angeles; San Bernardino and Riverside; Alameda, Contra Costa and San Francisco; Sacramento and Solano; Kern; Fresno and Madera; and San Diego.

“Sickle cell disease is a complex condition that affects both the physical and mental health of patients, and it is critical that we provide them with first-rate care in the community,” Supervisor Mark Ridley-Thomas said. “Since 2016, LA County’s Department of Health Services and the Sickle Cell Disease Foundation have helped adults with sickle cell disease at the Martin Luther King Jr. Outpatient Center in Willowbrook. I’m thrilled to see this model expanded across the State.”

The budget allocation will help fund clinical workforce development to strengthen doctors’ and nurses’ understanding of current care guidelines, expand outreach and education, and increase tracking to better monitor care and outcomes through a partnership with the Sickle Cell Data Collection Program. This funding will improve the following outcomes:

  • African-Americans and Hispanic-Americans are disproportionately impacted, especially in the Los Angeles area where close to 2,000 patients live with SCD.
  • The average life expectancy for people with the most severe form of SCD is 30 years shorter than that of people withough SCD.
  • Patients with SCD have the highest rate of returning to the hospital within 30 days of being discharged compared to other health conditions.
  • The rate of stroke in adults (age 35-64 years) with SCD is three times higher than rates in African Americans of similar age without SCD.
  • The number of physicians trained and willing to treat SCD patients, especially adult patients, is severely limited.

“We are very grateful for this critical funding that will finally help ensure that Californians with Sickle Cell Disease can access the level of medical expertise needed to address the symptoms of their disease so they can live longer, more fulfilling and productive lives.” said Mary Brown, president and CEO of the Sickle Cell Disease Foundation of California.

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About the Center for Inherited Blood Disorders
Center For Inherited Blood Disorders (CIBD) has cared for hundreds of children and adults in Southern California, offering a safety net clinic that provides health care services specifically to patients with inherited blood disorders.  CIBD has been able to increase access to care for those who are economically challenged by providing medical care regardless of ability to pay.

About the Sickle Cell Disease Foundation of California
The mission of the Sickle Cell Disease Foundation of California (SCDF) is to provide life-enhancing education, services and programs for individuals living with sickle cell disease. SCDF broadens public awareness, delivers effective advocacy initiatives and promotes innovative therapies to ultimately find a cure.

About the MLK Jr. Outpatient Center
Serving as a model for accessible, culturally-sensitive healthcare, the Los Angeles County Department of Health Services’ Martin Luther King, Jr. Outpatient Center operates over 70 primary care and specialty care clinics to serve the health care needs of surrounding communities. The state-of-the-art facility is part of a revitalized medical campus which includes a 131-bed community hospital, psychiatric urgent care, recuperative care center, and Center for Public Health.

Open Forum: Why Congress should ratify Trump’s NAFTA replacement

Posted: Sep 19, 2019 | Posted by Kassy Perry | Comments Off on Open Forum: Why Congress should ratify Trump’s NAFTA replacement

By Linda Dempsey
San Francisco Chronicle
September 19, 2019

U.S.-China relations have been in focus this summer, with trade negotiations in flux and tensions rising. American manufacturers agree with Congress and President Trump that China must do more to eliminate unfair trade practices and distortions. Manufacturers also rely on certainty and open, rules-based trade, so volatility and new barriers to commerce with one of our major trading partners make them less optimistic and less competitive. For those reasons, manufacturers are calling for a robust, enforceable agreement on a fairer, more open U.S.-China commercial relationship sooner rather than later.

But while manufacturers seek action across the globe, we have a trade agreement ready for congressional approval much closer to home: the United States-Mexico-Canada Agreement, or USMCA. While China has the second-largest economy in the world, Canada and Mexico, the two largest foreign purchasers of U.S.-manufactured goods, are even more important to the U.S. economy — more than the next 11 countries (including China) combined.

The two countries purchase more than a quarter of California’s total manufacturing exports and support nearly 100,000 manufacturing jobs in the state, according to data released by the National Association of Manufacturers. Put simply, California’s more than 35,000 manufacturers depend in significant part on a strong, reliable trade relationship with Canada and Mexico.

While manufacturers have seen continued growth in our trade relationships with Canada and Mexico, we have also recognized the need to update the 25-year-old North American Free Trade Agreement. Technology and innovation have reshaped the economy and the way we do business over the past quarter-century, but the NAFTA rules remain unchanged.

The USMCA addresses these issues directly, updating several key aspects of NAFTA to reflect the modern economy.

The USMCA would bolster American innovation with best-in-class intellectual property protections and enforcement provisions that are vital to manufacturers. With stronger and clearer rules to protect patents, trade secrets, trademarks, copyrights and other forms of intellectual property, the USMCA would catalyze American innovation and help manufacturers stay on the leading edge of inventions that save lives, improve communities and the environment, and support well-paying jobs.

To address advances in digital trade, the agreement includes a chapter setting rules to ensure that manufacturers can rely on digital trade without discrimination or unfair treatment. These rules are increasingly important to small businesses that use the internet as a global storefront.

The USMCA would also provide more access to Canadian and Mexican markets for American goods and remove more of the red tape that often prohibits small and medium businesses from selling their products in other countries.

The trade deal includes additional provisions that level the playing field for U.S. manufacturers by raising standards on a broad range of issues, from transparency and fair competition to labor and the environment.

The benefits would extend to every state and throughout Canada and Mexico, offering businesses across North America new opportunities to grow and expand. The economic implications of a robust and open North American marketplace are difficult to overstate. And moving this deal forward would send a strong message to China and other countries about the standards and rules needed to foster fairer, more open commercial relationships. Manufacturers and businesses across the country are calling on Congress to move quickly to ratify the USMCA.

Linda Dempsey is the vice president of international economic affairs for the National Association of Manufacturers.

Commentary: Why legislation that promises patient protection is bad medicine

Posted: Sep 2, 2019 | Posted by Kassy Perry | Comments Off on Commentary: Why legislation that promises patient protection is bad medicine

CALmatters
By Eve Bukowski
September 2, 2019

We all agree that drug prices are high, but a proposal before the Legislature would make that situation worse, even as it seeks to solve the problem.

In fact, I’m concerned that this “cure” for high drug prices might just kill this patient.

You see, I shouldn’t be alive today.

For the past 11 1/2 years, my Stanford University physicians and I have fought Stage 4 metastatic colon cancer. I’ve been prescribed every available chemotherapy and immunotherapy option, endured five rounds of radiation and undergone 63 surgeries. My cancer is not in remission and we must outwit it constantly so I can remain alive to see my children grow up.

I’m also an advocate who has worked professionally with the life sciences industry for years and benefitted from the lifesaving research and development. I understand better than most people the complicated and convoluted drug supply chain. And I’ve seen first-hand the law of unintended consequences.

At issue is the critical need to get generic drugs to market faster and more efficiently, giving consumers access to lower-cost prescription medicine that can save them hundreds or even thousands of dollars each year.

The proposal before the Legislature, Assembly Bill 824 by Assemblyman Jim Wood, Democrat from Healdsburg, is ostensibly designed to prevent delays in bringing generic medicines to market, but it would have the opposite effect.

It seeks to complicate and discourage the use of settlement agreements to resolve patent lawsuits—settlements that actually increase access to lower-cost, life-saving generic medicine and speed their entry into the market.

The result of enactment of AB 824 would be to slow the process of bringing cost-saving generic drugs to market because it would limit the ability of drug manufacturers to settle patent litigation. Such an outcome would be disastrous for patients like me.

These settlements, which usually bring generic drugs to market years sooner than they otherwise would have been released, have made possible the launch of many generic drugs prior to the patent expiration date.

Access to affordable medicine, as soon as possible, is critically important for patients. Patent settlements have led to patient savings.

Proponents of AB 824 say they want to prevent any settlement agreement that would lengthen patent protections for a given medication. These so-called “pay for delay” provisions should in fact be outlawed; no settlement agreement should ever result in prolonging a brand-name patent.

But their proposed solution would also disrupt legitimate patent settlements between pharmaceutical manufacturers. That approach is nonsensical and counterproductive, as it would result in reduced access to needed medicines and increased costs to consumers.

The California Attorney General and the Federal Trade Commission already have the authority to review settlements on a case-by-case basis, which is the best way to protect consumer interests. Under California’s strong anti-trust laws, the attorney general can act to invalidate any settlement if its effect is to limit market competition.

In fact, just a few weeks ago, three drug makers agreed to pay nearly $70 million to the state of California to settle “pay to delay” allegations. The system works. So AB 824 is a solution in search of a problem.

We need to stay focused on making sure that patients can get the medicines they need when they need them. If the goal is to make medicine more affordable and accessible, the last thing patients need is a new legal roadblock that will stifle access to lower-cost alternatives.

That’s a prescription for disaster.

Eve Bukowski is a stage 4 cancer patient and life sciences industry advocate from Davis. evebukowski@gmail.com. She wrote this commentary for CalMatters.

Civility, respect, courtesy: Disappearing words and actions

Posted: Aug 30, 2019 | Posted by Kassy Perry | Comments Off on Civility, respect, courtesy: Disappearing words and actions

Turlock Journal
By Jeffrey Lewis
August 30, 2019

Turmoil in local city government, compounded by a general lack of clarity on the economic front at home and globally, has caused some in our area to take a giant step backward.

Taxpayers are angry and frustrated, in part due to Turlock’s inability to solve problems primarily caused by inherited economic miscalculations. But that isn’t all that’s at play. At the root of this turmoil lies fear and uncertainty.

Turlock, like many other localities, is witnessing an unprecedented race to the bottom, in which elected officials from both political parties are vying to outpace each other. This failure to collaborate is symptomatic of the tawdry politics of today, further exacerbated by angry citizen emails and social media attacks on elected officials for trying to do their jobs.

Many years ago, the government was once an inspiring place of grand ideas and magnanimous spirit. Today, though, what passes for debate more closely resembles a disheartening hotbed of moral ambiguity and confusion.  Politicians and community members are using social media tools to argue their point of view, often peppered with insults and innuendo.  The worst part, it has gotten personal.

What happened to Turlock?  To our society?  Disagreement once opened opportunities for robust discussion, which might ultimately lead to consensus, or at least an attempt to find it through respectful debate.

Opinions are not character faults.  However, when mixed with personal attacks on gender, race, body type, hairstyle and clothing choices, they push civility, and substance, out the window.  In doing so, the City slips into becoming a place where businesses may not settle.

Turlock is a community of great pride and history – a faith-based community that truly cares for its neighbors when they are in trouble.  When the economy took a nosedive, people pulled together to help.  Our focus should be on families and helping to keep them healthy, fed and intact.

Given the economic nemesis that the City cannot escape from, there is no greater opportunity than today to come together with one voice, one solution, predicated on honest debate and complete transparency.

It is important that we not forget that social media can help educate and provide a forum for discourse, but it can also be a distraction and deterrent for finding solutions.

Civility and leadership are the fabric that holds our nation together. Divisiveness can rip a community to shreds. Our leaders must rise above personal and partisan agendas and work together, to find solutions to our problems here at home.

It is Labor Day, a time to celebrate working women and men, something Turlock has a long and rich history of doing. Part of that celebration should be re-invoking kindness and respect.  Are you willing to start anew, learn to challenge the status quo respectfully?

— Jeffrey Lewis is the President and CEO of Legacy Health Endowment in Turlock.  He can be reached at jeffrey@legacyhealthendowment.org. The views expressed here are his own and not those of the Foundation.

Guest View: California manufacturers will grow with new free trade agreement

Posted: Jul 26, 2019 | Posted by Kassy Perry | Comments Off on Guest View: California manufacturers will grow with new free trade agreement

By Lance Hastings
July 26, 2019
The Business Journal

If California were its own country, it would rank as the fifth largest economy in the world. Here, production doesn’t just refer to movies, and tech isn’t just an industry. From cars to computers, smartphones to spaceships, California manufacturers are innovating and making products that will pull our country into the future—doing so with technology that already exists. Our state’s manufacturing industry is poised to grow and thrive as long as lawmakers provide pro-growth policies to enable it—which is exactly why manufacturers here in California and across the nation are calling on Congress to support the United States-Mexico-Canada-Agreement (USMCA) when it comes to a vote.

Last year, leaders from the United States, Canada, and Mexico came together to update the 25-year-old North American Free Trade Agreement (NAFTA). NAFTA, while forward-thinking for its time, has become increasingly outdated as our technology and modern economy continue to outpace our economic policy. Our countries’ leaders recognized this and signed the USMCA in November 2018. The next step is for Congress to ratify it expeditiously once the administration formally submits it for approval—which we expect to happen soon.

This new deal not only protects free trade throughout North America, it provides a number of long-awaited improvements that will help to shepherd our economy and our manufacturing industry forward for decades to come.

First, the new agreement includes best-in-class rules that would strengthen United States intellectual property (IP) protection and enforcement. Being in such a technology-driven and innovative state, IP rights are critical to a number of sectors and businesses. With even better IP standards that reflect the modern economy, California manufacturers will be emboldened to create new, environmentally friendly, and economical ways to put food on tables across the United States or even to find the next discovery in outer space.

The USMCA would also improve digital rules to ensure companies in the United States using online storefronts have safe and unfettered access to consumers across Mexico and Canada that would help their businesses grow. And let’s not forget about the ways it levels the playing field for many American businesses by improving the way anti-competitive behaviors by state-owned enterprises are addressed and by expanding access into both Canada and Mexico by removing unfair trade barriers. This agreement is undoubtedly beneficial to each North American nation.

To date, Mexico is the only country that has ratified the USMCA. And with data from the National Association of Manufacturers (NAM) showing the positive economic impact the USMCA would have, it is surprising that some in Congress have not shown the same sense of urgency.

California has more than 25,000 manufacturing firms, 93 percent of which are small- and medium-sized, that depend on free trade throughout North America. And these jobs can be found across our state and throughout many different industries, creating well-paying, career-track jobs. In fact, the jobs in our state that are supported by North American trade pay an average of $100,060 in wages and benefits in comparison to an average $54,329 in nonfarm industries.

According to the same NAM study, California’s economy would suffer without the passage of a strong North American trade agreement, with the state’s manufactured goods exported to Canada and Mexico potentially facing between $1.2 billion and $10.1 billion in extra taxes. That’s in comparison to zero tariffs today and it’s completely unacceptable.

Each day that the USMCA is not approved is another day that goes by without certainty for manufacturers. It’s another day that manufacturers could be creating more well-paying, stable jobs for the middle class. As is so often the case, manufacturers are looking to California to lead, to show what is possible and to pull our country into the future by signing the USMCA. We are up to the task, and let’s get to work!

Lance Hastings is president of the California Manufacturers & Technology Association.