Author Archives: Linda Barlow

How to Help Sick Kids Get Better When Insurance Isn’t Enough

During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.

Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services and prescription drug copays. This week, we’d like you to meet Karis, whose family can’t afford her type 1 diabetes testing supplies.

Imagine this: You take your child to the doctor thinking she has an infection. You discover that she has a life-altering condition and your health insurance doesn’t cover all the costs.

That’s what happened to Alicia Bell when her daughter Karis was diagnosed with type 1 diabetes. Says Bell: “There are no vacations from being a parent, and there are no vacations from being a parent of a T1D child.”

Bell was not only surprised at her daughter’s diagnosis, she was further amazed to find her insurance wouldn’t pay for all the diabetic testing supplies Karis would need.


Did You Know?

60% of bankruptcies in the U.S. are related to medical expenses.


The Bell family is far from unique. Each year, more and more Americans are forced to choose between paying for lifesaving treatments and for food, housing and utilities. People may cut pills in half, skip meals or housing payments or declare bankruptcy. An estimated 29 million Americans are underinsured and more than 60 percent of all bankruptcies in the U.S. are related to medical expenses. In the Bells’ case, Alicia would need to go into serious credit card debt just to pay for her daughter’s diabetes monitoring and testing supplies.

“I would never want money to factor into my daughter’s health care,” Bell says. “I’d sell my

Karis and her new insulin monitor

Karis and her new insulin monitor

house and everything I own if I had to.”

Fortunately, when health insurance is not enough, there is a group that helps close the gap, putting life-changing medications within reach for thousands of people in need and helping to pay for prescription drug copayments, deductibles and health insurance premiums for critical treatments.

A HealthWell Foundation Pediatric Assistance Fund grant not only pays for Karis’ supplies—including an insulin monitor, so Karis doesn’t have to have her finger stuck several times a day—it pays the co-insurance for her hospital and clinic visits and will help pay for an insulin pump if and when she needs one.

Your generous gift to the HealthWell Foundation can help kids like Karis and others afford the medical treatments they desperately need. Consider a monthly gift, a tribute or memorial donation, or an employer-sponsored fundraiser or end-of-year giving campaign to make an extraordinary and lasting difference in the lives of kids in need. Donate today.

Focusing on Recovery, Not Financial Burdens

During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.


Did You Know?

HealthWell’s Pediatric Assistance Fund is the first of its kind. It was opened in response to families who had nowhere else to turn.


Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services, prescription drug copays and other out-of-pocket costs. This week, we’d like you to meet Anna, who was born with a rare disorder affecting the brain.

In the following letter, Anna’s mom Mary, from Delta, Pennsylvania, shares the challenges of affording care for their little girl and the big difference that HealthWell’s Pediatric Assistance Fund grant made in their lives.

Anna, after surgery, healing & growing

Anna, after surgery, healing & growing

Our daughter, Anna was born with a birthmark on her face and scalp. The doctors suspected there was more to the story. A CT scan of her head confirmed the diagnosis of Sturge-Weber Syndrome, a rare disorder affecting the brain. We spent the next few weeks as new parents trying to understand our beautiful little girl and the rare disease she had. When she was just 3 weeks old, she had her first set of seizures. It was terrifying to see her little body so out of control. She was admitted to the hospital and started on medication. The doctors were able to control the seizures, but never for too long.

Since that first seizure many years ago, we have celebrated many days without seizures and suffered through the days when they eventually returned. We changed medications, avoided activity that might over fatigue her, struggled through specialized diets and prayed for a cure. Eventually, Anna was scheduled to undergo a radical surgery to remove the diseased half of her brain. We knew this could offer her a future without seizures, but we also knew the incredible cost we faced.

With the help of the HealthWell Foundation, Anna had her surgery. She is back home, seizure free – healing and growing. Our family has been able to focus our attention on Anna’s recovery knowing the financial burden has been reduced.

We are so grateful for the financial support the HealthWell Foundation has offered to us. With their help, we are able to celebrate the wonderful little girl God has blessed us with and we look forward to her bright future.

Help kids like Anna get the medical treatments they desperately need. Ask your employer today about how your donation to HealthWell’s Pediatric Assistance Fund can go farther with a matching gift program. Donate today.

New Series: The Value of Personalized Medicine

For more than two years, the staff of and contributors to www.RealWorldHealthCare.org (RWHC) have been proud to share stories about proven healthcare solutions that lower costs, improve access to care, and lead to better patient outcomes.

Linda Barlow

Linda Barlow

Starting this Fall, RWHC will embark on a new mission. Each quarter, we will share ideas and insights from translational researchers working to bring new therapies to patients who need them. Our first series will focus on Personalized Medicine and Companion Diagnostics. Later series will cover topics such as:

  • The Growing Role of Big Data in Oncology
  • Determining the True Value of New Therapies
  • What’s New in Orphan Drug Development

The new format will allow us to offer a deeper analysis of these emerging topics.  Our approach will be to interview researchers who have published articles of interest in medical journals, about the real world implications of their findings.  We look at it as “RWHC 2.0.”

We hope you enjoy hearing from the scientific leaders who are taking medicine in new directions to improve patient outcomes.

As always, we want to hear from you. Please take a brief moment to answer the survey question below and let us know what topics you’d like us to feature in future series.

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HCUP: Potentially Preventable Pediatric Inpatient Stays for Asthma and Diabetes

A statistical brief from the Healthcare Cost and Utilization Project (HCUP) addresses one of the key issues in the healthcare industry today: preventing hospitalizations. HCUP examined trends in the rates of potentially preventable pediatric visits for asthma and diabetes, which have increased by 21 percent in recent years after seven years of decline.

Linda Barlow

Linda Barlow

Potentially preventable pediatric stays were more common for asthma than for diabetes, with asthma-related stays occurring at over four times the rate of diabetes-related stays. According to HCUP, asthma and diabetes remain more common in certain racial and ethnic minority groups and among poor and underserved populations.  Many hospital stays are potentially avoidable through regular ambulatory care by specialty and primary care physicians. Efforts to improve clinical guidelines and establish medical homes, as well as other initiatives may also result in a decline in potentially preventable pediatric hospital stays, according to the brief.

What strategies can patients and caregivers pursue to help reduce the rate of preventable hospital stays for children suffering from asthma and diabetes? Let us know your ideas in the comments section.

Retraining Retired Docs to Alleviate Physician Shortage

If the industry estimates are correct, the United States could be facing a shortage of primary care physicians to the tune of 130,000 needed doctors by 2025. But a program developed by a group of physicians, along with University of California San Diego School of Medicine faculty, seeks to address that shortage. 

Linda Barlow

Linda Barlow

The Physician Retraining and Reentry program (PRR) is an online program designed to give experienced, medically licensed physicians and specialists — retired or otherwise — the opportunity to practice adult outpatient primary care in understaffed clinics across the country. 

The program has also given new hope to disabled surgeons who are no longer able to practice surgery, but who are far from voluntary retirement. While these surgeons are unable to perform surgery due to dexterity issues, they are fully capable and eager to treat patients in a primary care setting. 

“With approximately 10,000 baby boomers turning 65 each day and becoming Medicare eligible, and an additional 30 million people gaining access to healthcare due to the Affordable Care Act, PRR is doing its part to help make a positive impact on the nation’s healthcare system,” says Dr. Leonard Glass, founder and president, PRR, and a former UC San Diego School of Medicine professor. 

To participate in the program, physicians must take 15 online courses, covering everything from cardiology and dermatology, to medical records. Doctors must pass each course’s test before moving on to the next course. After completing all 15 courses, doctors must pass a final online exam. 

“Physicians completing the program will have mastered the medical knowledge and diagnostic skills necessary to serve as outstanding general practitioners,” adds Dr. David Bazzo, chief medical officer, PRR.  

After a doctor completes the program, the PRR team provides job placement assistance in health centers in desperate need of expertly trained staff. This includes community clinics, collegiate clinics, industrial clinics, emerging chain store clinics, hospital group clinics, retail clinics, military clinics and urgent care centers. 

PRR has received inquiries about its program from 1,000+ physicians in nearly all 50 states, including U.S. military physicians who have served internationally and are hoping to secure jobs in primary care when they return home. More than 70 students are currently enrolled in the program and just over a dozen are either employed or pursuing employment with the help of PRR staff. 

One of those graduates is Dr. Michael LaRocque, who currently is working as an M.D. with a federally qualified health center (FQHC) in Vista, California. 

“After running a private urology practice for nearly three decades, I entered retirement for several years before reading a news article about Physician Retraining & Reentry,” says Dr. LaRocque. “I always thought primary care was an interesting field, and I was ready to make more productive use of my free time. By completing the PRR program, I was able to land a great job that averages about 30 hours per week at a federally qualified health center near my home. It’s wonderful to be seeing patients again and to be making an income without the responsibility of running an entire practice.” 

PRR is a unique program designed to address the country’s doctor shortage program. Are you aware of any other programs with the same goals? Let us know in the comments section.

 

Categories: Access to Care, General

Why Is Healthcare Struggling with Patient Engagement?

Banks, airlines and other consumer industries have long since figured out how to engage customers using technology. But not so with healthcare, according to a report from Chilmark Research.

Linda Barlow

Linda Barlow

The report — based on interviews with healthcare executives, clinicians and technology suppliers — found that basic patient portals tied to electronic health records (EHRs) are the foundation for a majority of digital patient interactions. However, some provider organizations have yet to adopt these basic patient portals, placing patient engagement behind other enterprise priorities.

One of the primary problems facing patient engagement technologies, “Technology vendors currently serving the market have done a middling job of rolling these products out to their customers,” said Naveen Rao, analyst, Chilmark Research.

Read more about how technology vendors are lagging with patient engagement technology in this article from Healthcare IT News. Then, let us know what you think. Should patient engagement be considered the lynchpin of a successful modern healthcare IT strategy? How can providers and vendors work together better to ensure success? Sound off in the comments section.

Speaking with: Ann Romney

Editor’s Note: This week is MS Awareness Week and people everywhere are creating connections stronger than the ones MS destroys. During this special week, take action to help others learn more about MS and what they can do to make a difference. In 1998, Ann Romney, wife of American businessman and politician Mitt Romney, was diagnosed with MS. Here, she shares her experiences as someone living with MS.

Real World Healthcare: How did you first learn you had MS?

Ann Romney

Ann Romney

Ann Romney: The year was 1998, Mitt and I were living in Boston. We had five sons, mostly grown with our youngest son still living at home as a senior in high school. The symptoms came on slowly at first, I would feel dizzy or have a hard time holding a glass. Then they worsened, I was tired, my right leg was numb, I was losing my balance. I explained my symptoms to my brother Jim, a doctor, and he suggested I see a neurologist. Mitt accompanied me to the doctor to find out the results of testing, we learned together I had MS.

RWHC: What were some of your biggest concerns when you were first diagnosed with MS? How did the time and energy required to take care of your own health impact your family?

AR: When first diagnosed with MS, I was very frightened and depressed. I had many commitments, to my family, church and community. My biggest concern was that I would not be able to keep up with my responsibilities in and outside of the home much less take care of my health. The disease was progressing rapidly and I had no idea if it would stop or how debilitated I would become.

I was blessed to have Mitt by my side. He didn’t miss a beat and immediately picked up the slack at home. We ate a lot of peanut butter and honey sandwiches (Mitt’s specialty) during that time but what really mattered was the love and support I received from Mitt and my family.

RWHC: Tell us about your earliest days with the disease—the process of being diagnosed and starting treatments—did you have any difficulties accessing the appropriate physicians and/or treatments?

AR: When I was diagnosed in the late 90s, there weren’t many treatments for MS. I was told to go home and come back when the disease got really bad. That was a common response to an MS diagnosis 20 years ago. Then a friend told me about a neurologist who took a different approach to treating MS, Dr. Howard Weiner at Brigham and Women’s Hospital.  The first time I saw Dr. Weiner, he told me he would be aggressive in treating the disease – I began intravenous therapy that day. 

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A note from our sponsor: Are you, or is someone you love, an MS patient on Medicare in need of financial assistance? Click here to visit The HealthWell Foundation’s eligibility page.

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RWHC: I understand that you have credited a mixture of mainstream and alternative treatments with helping to manage your disease. Explain how that is so.

AR: I feel best when I am properly rested, eating healthy, whole foods and when I incorporate exercise into my daily routine. I try to do yoga or Pilates several times a week as well as ride horses, all have been extremely helpful in developing my core. When newly diagnosed, I tried several activities to boost my energy including reflexology and acupuncture. Over time, these methods helped to improve my energy levels.

RWHC: What was the turning point or catalyst that changed you from an MS patient to an MS activist?

AR: During the campaign, I was blessed to have the opportunity to travel the country and hear from Americans daily. At many of the events I attended, people diagnosed with neurologic diseases would come out to support me – not because we shared political ideology but because we had a disease in common. They would often wait standing in the hot sun for hours. By the time I would reach them, they would be tired and weak – sometimes collapsing. I can’t tell you what it meant to me – day after day – having those people show up for me. After the campaign ended, I would often find myself thinking of those people and wonder how I might return the favor. How I might show up for them.

While talking with Dr. Weiner at one of my annual visits, he told me about the research he was doing in the MS space and that it was affecting research in other neurologic diseases. I asked him what was needed to further the research, he said awareness and funding. That’s the moment I knew I could be helpful. Together with Brigham and Women’s Hospital, we opened the Ann Romney Center for Neurologic Diseases.

RWHC: Explain the type of work you’re doing to establish the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital. What is your goal and the goal of the Center?

AR: Through the Ann Romney Center for Neurologic Diseases, Brigham and Women’s Hospital we will convene and lead a global collaboration in medical research to accelerate treatment, prevention and cures for five of the world’s most complex and devastating neurologic diseases. Together, we will inspire hope and empower those confronting multiple sclerosis (MS), Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors.

I have set a personal goal to raise 50 million dollars in support of the Ann Romney Center. My mission is to enable the doctors at the Ann Romney Center to find cures for neurologic diseases so that the next generation does not have to suffer as so many are today.

RWHC: Many MS patients are not just grappling with the health effects of the disease, they are grappling with the financial effects as well. For some, it may come down to decisions between paying their monthly mortgage or paying for their monthly medications. Fortunately, there are charitable patient assistance programs like the HealthWell Foundation, which provide financial relief—even when the patients have insurance, the costs of the copays alone can create financial hardship. How important do you think programs like this are in terms of helping patients manage their disease?

AR: Being diagnosed with MS was one of the scariest moments of my life—for me and for my family. But we were fortunate to have access to great care, treatment and therapy. I am grateful for programs such as The HealthWell Foundation that work to remove some of the financial burden of treatment and allow the patient to focus solely on their treatment and recovery.

RWHC: What do you want MS patients and their professional and family caregivers to know about MS?

AR: Collectively, MS, Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors affect more than 50 million people worldwide. These neurologic diseases are among the most devastating diseases of our time.

In my darkest hour, Dr. Weiner was a beacon of hope. I was desperately sick and feeling very alone with my illness. Life felt out of control and I didn’t know how to make it better. I was losing hope. Dr. Weiner took me by the hand and said, “You’re going to be okay. Come with me. We’re going to take care of you.” Giving my disease over to Dr. Weiner allowed me to stop worrying and instead focus on getting better. And after a long battle with MS under the care of Dr. Weiner, I am in remission. Dr. Weiner and the incredible folks at Brigham and Women’s have created a center that is improving lives every single day. I am humbled that my name is associated with this work, and through the Ann Romney Center for Neurological Diseases, I want to be that beacon of hope to those suffering, just as Dr. Weiner was for me.

 

 

With Great Health Comes Great Responsibility

Accountability. As children, we are taught that our actions have consequences and that we must be responsible for our own behaviors if we are to live as free and independent adults.

Linda Barlow

Linda Barlow

This simple life lesson has been shaping the healthcare landscape for some time now as hospitals, individual clinicians and other healthcare providers face increasing requirements to participate in Accountable Care Organizations and provide performance measures indicating accountability for patient outcomes—efforts that have successfully improved the quality of care for many. But what about the patients themselves?

“The greatest untapped resource in healthcare is the patient,” says Don Kemper, MPH, Founder and CEO of Healthwise, a non-profit organization with a mission to help people make better health decisions. “The time has come for people to ask more of themselves in managing their health.”

According to the authors of a report of the American College of Cardiology/American Heart Association Task Force on Performance Measures, patient participation and engagement are integral to the success of any treatment plan–a position echoed by the American Medical Association and the Institute of Medicine.

So how can we, as consumers of healthcare services, be more accountable for our own care? The authors of the ACC/AHA report suggest that “the general framework of shared accountability is predicated on partnerships between patients and clinicians, in which patients play an active role in setting goals, making treatment decisions and assessing outcomes. Ideally, patients would be aware of what to watch for, contact their clinicians when symptoms arise, learn about their condition and what they can do to improve their health, implement agreed-on treatment plans and lifestyle changes, and follow up with their clinicians to assess outcomes and adjust the treatment plan.”

“Developing a trusted relationship is key,” adds Nancy Carteron, M.D., HealthWell board member, rheumatologies, and autoimmune disease specialist at California Pacific Medical Center in San Francisco and Associate Clinical Professor at the University of California at San Francisco. “Patients need to feel heard, but from a physician’s standpoint, the limited time they have with patients can make that hard to accomplish, especially for complex illnesses. It may require the provider to restructure its practice. And if the patient does not feel their best interest is being served, they should try another provider or system.”

Healthwise’s Kemper suggests that patients focus on “patienthood”—the self-management behavior that ensures we either give to ourselves or get from others the care we need to best manage our health risks and medical problems.

“Each of us falls somewhere on the continuum of patienthood,” Kemper says. “The extremes can range from annual tooth brushing to self-surgery, but most of us fall well in the middle. And for most of us, it’s possible to do more for ourselves, especially with the right information, tools and expectations.”

“We should feel accountable for asking questions anytime we don’t understand our options, anytime we think something may not be right with our care, and anytime we have an idea for how we might contribute to the care,” Kemper adds. “And we should be accountable for adhering to any self-care plan we have agreed to follow—or to report why we have veered away from it.”

Are you someone who has started to take more personal accountability for your own care? Tell us what you’ve done to be a healthier, more involved patient. Are you a healthcare provider who has seen an improvement in patient outcomes when the patient is highly involved in his or her own care? Share your stories with us in the comments section.

Need a Doctor? There’s about a Hundred Apps for That

Remember when the only personal device people had to monitor their health was the trusty old bathroom scale, and maybe a blood pressure cuff they could use at their local pharmacy? What a difference a decade makes.

Linda Barlow

Linda Barlow

An explosion of personal, wearable, or otherwise easily accessible devices and apps used to track activity and fitness levels, monitor health problems, and even diagnose disease is well underway. In fact, more than 360 health and biotech (and nearly 390 fitness and sports) apps and products were exhibited at January’s International CES® in Las Vegas, including a new wave of trackers, online tools, wristbands and apps that collect your vital signs for medical purposes.

“Consumers now have more of an opportunity than ever to take control of their own health through technology,” says Kinsey Fabrizio, director, Member Engagement, Consumer Electronics Association (CEA)®. “There is a real convergence of technology in health and wellness, and with design advancements, improving tech and widespread adoption of mobile devices, consumer-centric care is now possible.”

According to Ms. Fabrizio, one of the hottest trends in personal health and fitness technology is devices that link to smartphones. One example of such a device is a fertility sensor from CES exhibitor Prima-Temp: a self-inserted, wireless temperature sensor that continuously and passively tracks a woman’s core body temperature, detecting the subtle changes that occur before ovulation, then sends an alert to her smartphone when she is most fertile. According to the company, understanding reproductive health and natural fertility signs can help couples avoid costly infertility treatments.

Another example comes from another CES exhibitor, Qardio: a wireless blood pressure monitor that offers a full year of battery life for 400 measurements versus the 80 available in typical monitors. The company claims the device—compatible with both iOS and Android—is the only wireless monitor that can track irregular heartbeats over time, providing users with warnings that they should consider contacting a doctor if the irregularity continues.

Wearable technology like fitness trackers, smart watches, and even pain relief technology also took center stage at CES. During a CES presentation, “The Potential of Wearable Technology,” CEA Director of Business Intelligence, Jack Cutts, pointed out that fitness trackers, “have made wearable tech mainstream, and that the newest generation of smart watches are more refined and are becoming the go-to wearable device.” Looking to the future, he said “other wearable technologies, such as smart fabrics and implantable devices, are still being explored.”

Ms. Fabrizio notes that healthcare technology also has become critical to aging in place, as evidenced by several exhibitors highlighting “lifelong tech” solutions that help seniors stay in touch electronically with providers, family members, emergency responders and other caregivers. One example is CES exhibitor MobileHelp, a mobile medical alert system that uses GPS medical alarm location technology to pinpoint the user’s exact location, so the closest available emergency responders are dispatched no matter where the user travels.

Some in the healthcare field—including attendees of CES’s Digital Health Conference—have raised concerns, not only about the privacy of patient data as it streams through the Internet and resides in the cloud, but also that people’s reliance on health and medical devices and apps will push the professional healthcare practitioner out of the equation. Some worry that no self-diagnosis technology can replace the in-person treatment available at a practitioner’s office, while others point to the ability of technology to increase the value and productivity of physicians.

Ms. Fabrizio adds that device and app makers are looking to help shape the future of digital health with products people can access easily. To that end, CEA, which represents 2,000 companies, formed a Health and Fitness Technology Division last year. The goal of the Division is to raise consumer awareness of how consumer electronic devices can help improve health and fitness as well as help manufacturers navigate the marketing, regulatory and myriad other challenges facing this nascent marketing segment.

“These CEA members are making products that are seamless with what people already do,” Ms. Fabrizio concludes. “They are more than fun; they provide valuable data that drives healthier behavior and preventive health benefits.”

Are consumer apps and devices for tracking health and fitness helping you improve your health? Share your opinion in the comments section.

A New Year of Healthcare Success Stories

From all of us at RealWorldHealthcare, Happy New Year! As 2015 begins, we continue to monitor the healthcare landscape for insights and real-world examples of what’s working to improve access to healthcare, help patients manage their healthcare costs, and allow for more patient-centered care.

Linda Barlow
Linda Barlow

While our focus and goals have not changed, one thing has: new editorial management. I am proud to have been associated with RealWorldHealthcare over the past year or so as an occasional blogger. I’m even more proud to now be its new editor and look forward to continuing shining a spotlight on healthcare success stories. 

We want RealWorldHealthcare to be a valuable resource for you. To that end, we hope that you can take just a few moments to tell us what you think about the topics we are covering. What do you want to see more of? Less of? Are there topics we aren’t covering that you think we should? 

You’ll only need a few quick minutes to answer the following questions. Please also don’t hesitate to contact me at lbarlow@whitecoatstrategies.com if you have a specific story to share; we’re always looking for guest bloggers. Thanks in advance for your insight.

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Thank you!