Real World Health Care Blog

Tag Archives: Multiple Sclerosis

Our Top 4 Most ‘Liked’ Health Care Stories

This week is Real World Health Care’s one-year anniversary. Over the past year, we showcased solutions that are proven to lower costs, increase access, and provide more patient-centered care. In celebration of this milestone, we are sharing the favorite posts as measured by Facebook ‘likes’ from our readers, who have visited the blog over 10,000 times.

 

#4 – Keeping Boston Strong: How Disaster Training at Osteopathic Medical School Helped Save Lives

In May, former RWHC editor Paul DeMiglio told the story of Dr. Danielle Deines’ emergency response to the Boston Marathon bombing. Dr. Deines’ education at the Edward Via College of Osteopathic Medicine – Virginia Campus (VCOM) required her to participate in a two-day, mandatory training curriculum on Bioterrorism and Disaster Response Program, which immersed her in real-life disaster training, field exercises and specialized courses.

(Photo courtesy of VCOM)

(Photo courtesy of VCOM)

The day of the bombing, after crossing the finish line, Dr. Deines found herself triaging runners in medical tents to make room for the victims. “The back corner became the most severe triage area, nearest the entrance where the ambulances were arriving,” she said. “I saw victims with traumatic amputations of the lower extremities, legs that had partially severed or had shrapnel embedded, and clothing and shoes literally blown off of victims’ bodies.”

Read the post: http://www.realworldhealthcare.org/2013/05/keeping-boston-strong-how-disaster-training-at-osteopathic-medical-school-helped-save-lives/

 

#3 – Making Life Easier for Patients and Loved Ones: Meet MyHealthTeams

In April, Eric Peacock, Co-founder and CEO of MyHealthTeams, contributed a guest blog about the need for social networks for communities of people living with chronic conditions. These networks allow patients to “share recommendations of local providers, openly discuss daily triumphs and issues, share tips and advice, and gain access to local services,” he wrote.

“Sharing with people who are in your shoes offers a sense of community that can’t be found elsewhere – these are people who know the language of your condition; they understand the daily frustrations and the small triumphs that can mean so much,” he added.

Read the post: http://www.realworldhealthcare.org/2013/04/making-life-easier-for-patients-and-loved-ones-meet-myhealthteams/

 

#2 – When the Health Care Blogger Becomes the Cancer Patient

In August, even as she was still undergoing daily radiation treatments, contributor Linda Barlow shared her personal story of being diagnosed with cancer and the slew of medical bills she faced even though she had insurance.

Linda Barlow

Linda Barlow

“While these out of pocket costs are certainly hard to swallow – I can think of a hundred other things I’d rather spend my money on – for my family, they are doable,” she wrote. “We won’t have to skip a mortgage payment or a utility bill. We won’t have to dip into a child’s college tuition fund. We certainly won’t have to worry about having enough money for food. But I know – from my work on this blog and with its main sponsor, the HealthWell Foundation – that many families living with cancer aren’t so lucky.”

Read the post: http://www.realworldhealthcare.org/2013/08/when-the-health-care-blogger-becomes-the-cancer-patient/

 

#1 – What If You Want Politicians to Get Moving But You Can’t Move?

Neil Cavuto

Neil Cavuto

Last week, Neil Cavuto, Senior Vice President and Anchor, Fox News and Fox Business, contributed a moving guest post about his triumphs over multiple sclerosis (MS) for MS Awareness Week. His deeply personal blog inspired resounding praise in the comments section and 1,300 Facebook ‘likes’.

“If I can pass along any advice at all, it is…to simply never accept a prognosis as is,” he wrote. “Fight it. Challenge it. ‘Will’ yourself over it. Many doctors say it’s a naïve approach to the disease, but attitude counts a lot for me with MS, as it did for me two decades ago when I was battling advanced Hodgkin’s Disease. Then, as now, it was about one day at a time, and staying optimistic and positive all the time.”

Read the post: http://www.realworldhealthcare.org/2014/03/ms-awareness-week/

 

If you would like to suggest a topic, contribute a guest post, or learn more about short-term co-sponsorship opportunities, please contact us at dsheon@WHITECOATstrategies.com. As a blog currently sponsored solely by the HealthWell Foundation, an independent non-profit providing nationwide financial assistance to insured Americans with high out-of-pocket medication expenses, co-sponsorship helps us keep Real World Health Care alive and well as a resource for journalists, health care professionals, policymakers, and patients. Plus, co-sponsorship will increase your organization’s visibility among thought leaders in the health care sphere.

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What If You Want Politicians to Get Moving But You Can’t Move?

Editor’s Note: This MS Awareness Week, we are pleased to feature a guest post by Neil Cavuto, Senior Vice President and Anchor, Fox News and Fox Business. Mr. Cavuto is an inspiration to many people living with multiple sclerosis, and he shares his perspectives on triumphing over the disease.

Neil Cavuto

Neil Cavuto

Perhaps the most maddening thing about having MS when you’re a TV anchor is that some days it hits you when you’re on TV and you’re “trying to anchor.” You’re trying to be on top of your game, but your body is playing games with you. That’s when “anchor” takes on a whole new meaning…not what I am on television, but the dead weight I’ve become in reality.

It’s at those times when I can’t move, that I often feel moved to explain to viewers, “it’s not me, it’s the MS.” It’s not me forgetting that guest’s name, it’s an exacerbation hitting my brain and causing me to forget that guest’s name. It’s at those times I lose my train of thought, that I question how thoughtless MS is. That’s when this illness hits home – when I just want to hit back, but can’t. This MS Awareness Week, it’s about reminding folks what it feels like to be…weak…to be vulnerable, to simply be unable to do the simplest things.

I can’t tell you the number of people who stop me and ask how I get through such moments. Fortunately, they’re moments, I answer. But sadly, sometimes very long moments. The one remarkable aspect of MS is how it quickly schools its victims to adapt…or perish. We either have to adjust to its wild, sometimes vicious swings, or face a life constantly succumbing to each and every progressive or remittent reminder.

That’s easier said than done, of course, but after more than 15 years of dealing with this, for me, it’s come to this: mind over matter. No matter what’s going on with your body, tell your brain it doesn’t matter. For me, the regimen for dealing with MS has been pretty much the same – once-a-week self-injections of Avonex, Biogen’s great elixir for slowing the progressive attacks, or at least, limiting their severity – over time.

But that doesn’t mean things don’t come up, and problems and complications still develop. For me, they’ve been everything from days-long blind spots that require me to “wing” my news copy on air…to allowing more time to make it to the news set, because I simply cannot walk.  I long ago concluded I cannot control these attacks – neither their frequency nor severity. But I “can” control how I react to them. That’s why I always try adapting and reasoning in my head that if the left eye goes out, coordinate better use of the right eye. The left arm weakens, get fairly competent enough with the right arm. These adjustments aren’t easy or fast but they certainly are now routine. That’s good for me, but it was hit and miss for years, perfecting this behavior for me.

I’m better at it now, but my nickel-and-dime advice for MS sufferers everywhere is, it’s a day at a time now…always. Part of doing what I do is understanding how I can keep making my body do it, even when it’s not cooperating. I mentioned how I often memorize copy and whole segments of my show in my head, for those moments I lose my vision. But there’s much more to it than that. After all, that’s fairly easy when I’m the one writing my shows…I kind of remember what I said. But it’s also about maintaining my physical energy, and that means denying the very progression of the disease itself.

Each and every morning, no matter what, I exercise my legs – certainly no Olympian workout – but on a treadmill or stationary bike, doing what I can to keep these legs going, even when they’re not cooperating. I’m forever panicked that someday they’ll simply fail, and then I’ll be a cripple. I fear that day is coming. Some neurologists warn me that given the progressive nature of my MS, it “will” be coming. But I fight like hell to push that day off. If I can pass along any advice at all, it is simply that – to simply never accept a prognosis as is. Fight it. Challenge it. “Will” yourself over it. Many doctors say it’s a naïve approach to the disease, but attitude counts a lot for me with MS, as it did for me two decades ago when I was battling advanced Hodgkin’s Disease. Then, as now, it was about one day at a time, and staying optimistic and positive all the time.

One of the things I’ve discovered about people dealing with illnesses is that sometimes they think they’re the only ones dealing with pain. There’s a natural self-absorption to that and to them, and when you throw in a guy who wears makeup and counts on viewers liking him, there’s a damn-near “fixation” to it. That’s not to say MS patients shouldn’t ask for support and understanding, they just shouldn’t demand it. As I’ve said many, many times, on the air and off, it’s not your spouse’s fault you have MS, or your kids’ fault, or your boss’s fault, or your colleagues’ fault. We may be surprised the world isn’t always understanding or caring or nurturing. But I’ve discovered all of us in life, bear some cross in life. Some are obvious. Some aren’t. But all do, if not at the time we literally first bump or trip into them…eventually.

I’ve become very philosophical with this disease, and concluded (heresy for a media personality) that it’s not always about me. It’s not always about us. It’s not always about our pain, or exacerbation, or what we’re forgetting, or what muscles are failing. I try to tell my kids we are the sum of our challenges, not necessarily the sum of our successes. I believe we are defined in life, not by the things that go well in our lives, but precisely by how we handle the things that do not.

I want that to be our greatest awareness this week – that we are not weak, that we are not victims, that we are not handicapped. We are challenged, yes. But we are up to the challenge. It might sound crazy to say that I’m grateful for MS, and grateful as well for having had cancer…but I am, and here’s why. It’s made me a better person, a better father, and a better husband. Now, I don’t know if viewers hearing my constantly compromised scratchy voice agree it’s made me a better anchor on TV. But “I” know it’s made me a more complete soul…just appreciating the fragility of life. That’s why I never take it for granted and have a healthy respect for just appreciating your health…compromised as it is. Because it sure beats…the alternative.

Make this a meaningful MS Awareness Week by promising never to stop seeing the strength that comes from being…weak.

Categories: General

What’s Getting Lost in the Health Care Debate?

Health care has never been more highly politicized than today.

Last year, it was central to the third longest government shutdown in U.S. history. This week, it consumed a large chunk of President Obama’s State of the Union address. Every day, we are inundated by news of health exchange website defects, insurance policy cancellations, coverage that forces people to switch doctors, and a laundry list of other problems attributed to the Affordable Care Act. On the flip side, advocates complain of the problems that make the U.S. rank among the lowest in health system efficiency among advanced economies and hail the health care law as a ray of hope.

Jamie Elizabeth Rosen

Meanwhile, a new study from the U.S. Centers for Disease Control and Prevention (CDC) revealed that one in four American families struggled to pay medical bills in 2012. Pretty dismal.

But there’s something missing from this barrage of coverage. Incredible advances are being made in health care every day, providing Americans with innovative ways to stay healthy, treat illnesses when they arise, and save money on medical problems. Just this month, a new program was launched to help people on Medicare living with multiple sclerosis afford copays for treatment; the FDA for the first time approved a postnatal test that can help parents identify possible causes of their child’s developmental delay or intellectual disability; and a study published in the Lancet showed that it is possible to train children’s immune systems to become less sensitive to peanuts.

At Real World Health Care, we focus on what is working.

That’s why I am proud to take over this week as editor of Real World Health Care. While much of my professional focus has been on health internationally – advocating for the development of vaccines to prevent tuberculosis, policies that save mothers and infants from dying during childbirth, and the formation of emergency medical systems in places where people have nowhere to turn – I am compelled by the notion that more attention must be focused on solutions that are improving U.S. patient care today. By serving as a central clearinghouse for information about improvements to segments of the U.S. health care system, we hope that our readers and those journalists who get ideas from our blog will be inspired to expand innovations that are working in health care today.

Real World Health Care – only entering its 11th month – already has a reputation for covering solutions to enhance nutrition, prevent diseases, reform medical education, improve hospitals, support patients, fund research, increase treatment adherence, and reduce costs. The blog serves as a resource for policy makers, health systems, research universities, non-profit health organizations, leading biopharmaceutical companies, government agencies, and the nation’s leading health journalists among thousands of others interested in practical and well-researched health care success stories.

We need your help to continue to grow our success. Have an idea for a story or a guest blog? Email me at jrosen@WHITECOATstrategies.com. Want to take part in advancing solutions in health care? Sign up for updates and share stories that inspire you via Twitter at https://twitter.com/RWHCblog. Do you believe in our mission to expedite improvements to our health care system? Consider co-sponsoring the blog while gaining visibility for your organization. We are now followed by over 300 health industry leaders each week, and journalists turn to us for story ideas about the good news on what’s working in our health care system. For more information, email dsheon@WHITECOATstrategies.com.

I look forward to continuing to cut through the political vitriol around health care with inspiring stories of what is keeping Americans healthy and saving lives. Thank you for giving meaning to our work by using this blog as a resource for yours.

Categories: General

Adherence Training Key to Improved Coordination of Care, Use of Specialty Drugs

I have been fortunate enough in my career to do humanitarian work in East Africa, and I have witnessed incredible health care service performed despite a paucity of resources. Conversely, one of the many health care tragedies in that part of the world is the downward therapeutic outcome spiral due to unattended simple maladies. An untreated toe could turn into a raging skin infection or worse. A simple break of a person’s leg improperly set could leave that person crippled for life.

Joel L. Zive

Joel L. Zive

In the United States, we have a different set of complex issues affecting our health care system. But there is a beacon of hope with some of the most vexing health care issues:  specialty drugs. Yes, they have annual costs that approach the length of phone numbers, but research and development costs must be taken into consideration.

Yet when one evaluates the pain and suffering these compounds alleviate – sometimes also saving money for our health care system in the areas of solid organ transplant rejection, HIV, Multiple Sclerosis and Cancer for example – real value emerges.

Despite their high expense, there are organizations, including the HealthWell Foundation, that help patients pay for access to these medications. And do not forget social workers, case managers and an army of master insurance billers in doctor’s offices and pharmacies across the country.

Yet these drugs carry with them a promise and a peril: A promise if their regimens, with high pill burden, are adhered to and the side-effects are understood. And a peril to the patient and unnecessary high cost to our health care system.

What person who deals in specialty drugs has not been brought to the brink of tears due to the frustration of non-adherence? Of a transplant patient who never told their pharmacist or transplant coordinator that he stopped taking their immunosuppressive medications and lost their transplanted organ? The efforts of the pharmacists, nurses, prescribers, surgeons, transplant coordinators, social workers that were wasted along with precious time and money are horrifying.

On the other hand, you have a patient newly transplanted or newly diagnosed with a complex disease. Frightened, scared — even angry — wondering whether they can afford medications to stave off dialysis or stay alive. In my career, I have seen first-hand examples of turnarounds in patients’ attitudes and quality of life due to these medications and adherence training:

  • A kidney transplant patient who was on dialysis for years who saw other patients go into dialysis walking, then in a wheelchair, then on a gurney before expiring.
  • Another patient at the dialysis center who announced one day, “I give up.” This individual had sufficient motivation but still needed guidance and assurance he would get his medications in a timely manner. Now, this person is rebuilding a life for himself and his family.
  • A woman tired, frail and scared lying in a hospital bed post-transplant wondering how she will live the rest of her life. With encouragement and adherence training she is now flying cross-country to see her relatives.
  • Another patient was diagnosed with relapsing remitting Multiple Sclerosis in the prime of his life. Yes, he had difficulty dealing with his insurance company and their specialty pharmacy.  But he had help and encouragement from an outside specialty pharmacy. And with patience and persistence from others he is now in graduate school.

What do these examples underscore? That although the United States enjoys an abundance of health care resources compared to Africa, what we’re missing is the coordination of care. Sometimes this is due to the health care system and sometimes this is because of the patient.

There are a couple of strategies providers can employ to improve this situation:

  • This scenario I saw first-hand in Rwanda.  If a pharmacist senses there is something not right mentally with the patient, he can contact a social worker in the clinic for further workup.
  • Another approach includes an agreement among the multidisciplinary team about what the adherence goals  should be. If the goals seem to be remiss, then the pharmacist could be notified, and he could handle the issue or direct it to the appropriate provider.

In both cases, there is feedback among the health care team. In the area of specialty drugs, adherence training can fill and highlight these gaps to the patient’s benefit.  As my colleagues in East Africa have told me, “We admire your health care system.”

We have many issues to be worked out and negotiated in the weeks, months and years ahead.  But let’s use adherence training to give my colleagues overseas something they can aspire toward and emulate.

What other strategies can providers employ to improve coordination of care? How can hospitals, government and health care industry stakeholders coordinate to become part of the solution when it comes to more effective adherence training?

Making Life Easier for Patients and Loved Ones: Meet MyHealthTeams

Talk to anyone impacted by a chronic condition – autism, multiple sclerosis, breast cancer – whatever disease or condition, they will all tell you it’s not easy. It’s not easy finding the support that best suits them. It’s not easy finding providers. It’s not easy period. At MyHealthTeams we create social networks for chronic condition communities. We believe that when you or a loved one are diagnosed with a disease, it should be easy to connect with people just like you, who can share their daily experiences, and help you discover the best people around to help you.

Since we founded MyHealthTeams in 2010, we’ve launched three social networks – MyAutismTeam, for parents of children with autism; MyBCTeam, for women facing breast cancer; and MyMSTeam, for those living with multiple sclerosis.

Each of the social networks we’ve built has been fully embraced by the communities we’ve addressed. Our flagship community, MyAutismTeam, has in less then 24 months, grown from 30 parents to more than 40,000 parents across the US.

Emily Ybarra, mother of a 4-year old boy with autism, was having difficulty finding a dentist capable of handling her child’s sensory processing disorder – a common challenge associated with autism.  After joining MyAutismTeam she connected with other parents near her in Orem, Utah and asked if anyone could recommend a dentist capable of “working with a special-needs child who recoils from human contact.”

Within a few days she had a referral to the autism-friendly dentist she still uses today.  More important, she had established friendships with many other parents of children on the autism spectrum.  Parents nearby reached out to her, but so did parents from all across the country who could empathize with the challenges of having a child with sensory processing disorder.   She wasn’t alone and she didn’t need to reinvent the wheel.

MyBCTeam already has roughly 4,000 women on the site since our launch in September 2012 and the majority of those women are actively engaged on the site or the MyBCTeam mobile apps every month.

This past week we launched MyMSTeam and as of this writing we are already closing in on 500 registered members.

Users of all three of these social networks share recommendations of local providers, openly discuss daily triumphs and issues, share tips and advice, and gain access to local services.  Thousands of posts, comments and updates are shared every day across these three sites and that number climbs each week as the networks expand.

Three major drivers behind the growth of our sites:

  1. People crave connection with other people just like them – they just need a safe and reliable environment to do so.
  2. The simplicity of our technology – our communities reflect aspects of social networks that our users are already familiar with (i.e. Facebook, Twitter, etc.) which provides for high user engagement.
  3. The rapid word-of-mouth among these communities.

One in two Americans live with a chronic condition[i] and they are seeking support from not only their medical providers, but also from people like them. In fact, for women with breast cancer, recent studies show that having strong social support improves outcomes[ii]. Sharing with people who are in your shoes offers a sense of community that can’t be found elsewhere – these are people who know the language of your condition; they understand the daily frustrations and the small triumphs that can mean so much.

With The Affordable Care Act on the horizon, implementing and expanding wellness programs has taken on a new importance for companies.  Organizations are seeking resources that not only help improve the quality of life for their employees, but also help control health care spending. Social networks, like the ones created by MyHealthTeams, allow employers to offer unique resources to their employees allowing them to create the support networks they need to get through to the next day.

For more information on the social networks created by MyHealthTeams, visit http://www.myhealthteams.com.


[i]An Unhealthy America: The Economic Burden of Chronic Disease, Charting a New Course to Save Lives and Increase Productivity and Economic Growth, Milken Institute, By Ross DeVol and Armen Dedroussian, Oct 2007 (free download http://www.milkeninstitute.org/publications/publications.taf?function=detail&ID=38801018&cat=resrep)

[ii] Journal of Clinical Oncology, Social Networks, Social Support, and Survival After Breast Cancer Diagnosis, Candyce H. Kroenke, et al., March 1, 2006

Categories: Access to Care

Express Scripts Provides Roadmap to Improve Health Care, Reduce Costs and Streamline Delivery of the Medicine Patients Need

You might be in a “utilization management program” and not know what that means or why it matters to your health. Offered by a variety of employers across industries, utilization management programs are designed to help patients evaluate their health care options and make decisions about the type of services they receive.

So how do these programs impact the delivery of specialty medications for cancer, HIV, inflammatory conditions, multiple sclerosis, and more?

MedAdNews.com reports that a new study from Express Scripts demonstrates how such programs can increase efficiency by ensuring that more patients who need safe, affordable and effective medications can access them.

As spending on specialty drugs continues to increase (18.4 percent in 2012, up from 17.1 percent in 2011), finding the most effective ways to improve the delivery of patient care, reduce cost and eliminate waste is more important than ever. Combining innovations from CuraScript and Accredo, Express Scripts draws upon Health Decision Science – which integrates behavioral science, clinical science, and actionable data – as a springboard to achieve just that.

Building upon this scientific, results-driven approach, Express Scripts provides care targeted to specific areas of patient need through Accredo’s Therapeutic Research Centers as part of its Specialty Benefit Services. Here, a broad array of health care providers integrate pharmacy and medical data to offer what Express Scripts describes as comprehensive patient care that strengthens coordination of services, boosts transparency, and produces solutions.

“It’s really about appropriateness and the right thing for a patient who really deserves safe and effective and affordable medication and ruling out waste. What our plans are most interested in is continuing to be able to afford to provide a benefit. This again was a great example of by doing the right thing that patients were able to save a significant amount of money and again preserve affordability,” said Glen Stettin, M.D., senior VP, clinical research and new solutions at Express Scripts.

Does your employer use a multiple cost management program for specialty drugs? If so, what type? If not, do you think your employer should? What might be some advantages or disadvantages?

Categories: Access to Care