Celebrating our birthday: See how we have grown!

This month, we celebrated our birthday and took this as an opportunity to reflect on our growth over the years! Our members are, of course, at the heart of our community, but we are so proud of all the contributions shared on SurroundHealth. We hope that you continue to share, network, and learn with us!

Take a look at the infographic below (click for larger view) to see some of our accomplishments:


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The Longest Road: Health Care Reform and Access to Long-Term Care

My Journey into Long-Term Care

A lot of people call my dad a hero. I have been known to be one of them. But that belies the circumstances that pushed him into turning his home into a nursing home so that he could help care for my mom during her decades of slow decline due to multiple sclerosis.  He can only continue to cobble together her care because he has the means to pay for it himself. Yes, she has a devastating disease that has robbed her of the ability to walk, dress herself, control her bodily functions, feed herself, speak more than a few garbled words—on a good day. But you don’t go to the doctor for those problems. She must be lifted, dressed, bathed, fed. This is the care (i.e., paid caregivers) she needs. But it is not medical and thus not “health care.” It’s something called palliative care, or assistance with daily living, or most commonly “long-term care” (LTC).  About seven in 10 Americans are expected to need it during their lifetime.

Unfortunately, about 44% of Americans age 40 or older mistakenly believe their existing health insurance or Medicare will take care of LTC. I started working on health care reform as a grad student in public health school back in 1984. By the time the Affordable Care Act (ACA) came around, I was excited, but I had also been around the block.  Before President Obama was elected, I worked with a volunteer advisory group for the National Multiple Sclerosis Society to develop a set of health care reform principles very early in the national policy discussion process to help the disability community have a place at the policy table.

ACA Health Care Reform, A Small Milestone

When the ACA became law, some of the biggest wins for people with chronic illness or disability were the elimination of discrimination based on a pre-existing condition. This alone had previously rendered millions of people uninsurable on the individual health insurance market. Elimination of lifetime coverage caps on certain services or body parts, and capping copayments for covered services are all tremendously helpful for those who faced no coverage or high out-of-pocket costs before Obamacare was implemented. Sadly, even the mini long-term care trial balloon called the CLASS Act was removed from the ACA, causing public financing of LTC to become a policy pariah.

The upshot is, if you need care that goes beyond what is “medically-necessary,” you are likely still waiting for coverage relief.

A Primer on LTC Costs and US Policy Milestones/Stalemates to Date

LTC reform may well be one of the toughest nuts to crack in health policy. Long-term care is complex. And while it may be more cost effective to offer a mix of community-based options (e.g., adult day health, home care, meals preparation, paratransit, and home modifications–like wheel chair ramps) rather than forcing individuals into nursing homes, it will still likely be costly. The US Department of Health and Human Services estimates home care services at $32,000-$56,000 per year, depending on where you live. A recent NPR expose on worker compensation systems reported that many states fail to provide enough funding to compensate permanently injured workers to cover long-term care assistance.

A much touted Supreme Court decision (Olmstead) promising that an individual does indeed have the right to receive long-term care in the “least restrictive setting.” The ruling is sparingly enforced since no funding was made available to build an infrastructure of community-based support services that can realistically substitute for institutional care.

Private LTC insurance is an option only for those who realize they don’t have already this type coverage and can afford it. LTC insurance can be quite costly, and becomes more so the older you are when you purchase. Policies are unavailable to those who do not meet health screening eligibility criteria. Private LTC insurance is also a “buyer beware” product, where it’s important to understand plan restrictions on the type(s) of care covered, and how functionally-disabled you must be to qualify for any services. That being said, it may be the best available option for those who can pay for and understand it.

Choose a Road and Aim for Change

I have spent many hours arguing with idealists about whether supporting the ACA was wrong, given that it does not lead to a single-payer system with evidence-based cost controls and universal access. However, I believe it is important to be pragmatic. Ironically, it may be the incredible complexity of LTC that allows us to chip away at it while we wait for a better opening for a bigger change.

When the momentum comes, coalitions of disability, a growing proportion of seniors, chronic disease organizations, veterans, and their families, as well as compassionate health professionals will be a voice to be heard.  Personally, I would start with a “long-term care wish list” dividing issues by perceived feasibility. Here’s a sample to start the conversation.

  • Easier: seek tax credits for home modifications, paratransit, purchasing LTC insurance, or other tangible services
  • Medium: Maybe not easy, but expect to see some gains at the state level, if the right coalitions come together. Expand eligibility for home care and adult day health care, allow payment on a sliding fee schedule, subsidies or cost caps to protect consumers. Fund family paid work leave, caregiver periodic and emergency respite services.
  • Difficult: seek affordable coverage for “assistance with daily living” under the ACA, Medicare, and private insurance as an “essential benefit.” Build an infrastructure of home and community-based LTC services that would allow the Olmstead decision to be fully implemented.

Recommended Reading and Additional Resources


This blog was authored by SurroundHealth member and community contributor, Tammy Pilisuk, MPH.

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Friedreich’s ataxia (FA)—new treatments offer hope for today and the future

Friedreich’s ataxia (FA) is a type of muscular dystrophy (MD) that has no cure or medical treatments, but patients have options for managing symptoms.

Learn about MD

What many know as MD is actually an umbrella term for more than 30 diseases that weaken and break down the muscles that control movement. MD is often, but not always, a genetic condition that interferes with the production of the proteins needed to form healthy muscle. MD can be unique for each patient. For example, you may see differences in:

  • Age of onset
  • Nature and area of muscle weakness
  • Speed of progression
  • Whether or not it is genetic

To learn more, visit:


Learn about FA

FA, one severe type of MD, affects 1 person in 50,000. Discovered and named in 1863 by German pathologist Nikolaus Friedreich, FA is a crippling, life-shortening neuromuscular disorder in which the nerve tissue in the spinal cord breaks down. As the disease progresses, the damage to nerve tissue affects the arms, legs, head, and neck.

Not every patient has all of the symptoms for FA. These are the most common ones:

  • Ataxia (loss of coordination) in the arms and legs
  • Feeling tired or weak
  • Impaired vision, loss of hearing, slurred speech
  • Scoliosis (curvature of the spine)
  • Insulin-dependent diabetes
  • Serious heart conditions

As the disease gets worse, patients need to use a cane, walker, or wheelchair. Typically patients are wheelchair bound by their early 20s. Mental capacities are not affected by FA, which may make the loss of muscle function a difficult realization for those affected.

You can learn more about FA in the Consensus Clinical Management Guidelines provided by the Friedreich’s Ataxia Research Alliance (FARA). FARA is an organization dedicated to advancing treatments to cure FA.

Find a care team

Patients with FA can manage their symptoms to improve their quality of life. It’s important that patients have a care plan to ensure that physical, social, and psychological needs are met. A patient’s care team should include specialists such as:

  • Speech and language therapist—Patients with FA often experience slurred speech and swallowing problems. A speech and language therapist can teach a patient how to make his or her voice sound clearer and improve swallowing. If necessary, the therapist can also give advice about speaking aid equipment
  • Occupational therapist (OT)—Patients with FA require walking aids. An OT teaches patients how to use their mobility devices and how to change their homes to make life easier
  • Physiotherapist—This specialist can help patients strengthen their muscles and keep patients from getting stuck in one position

NHS Choices provides the entire list of specialists here, as well as suggestions for other ways to manage symptoms.

Have hope for the future

While FA has no cure yet, clinical studies are being conducted in hopes of bringing patients hope and relief. Ten studies are in the recruitment stage. Click here for a full list of clinical trials for FA. You may even be able to volunteer for a study—check with your healthcare provider to see if one is right for you.

On FARA’s Web site is a list of clinical research centers that work together to advance treatments and clinical care for FA patients.  These centers work with pharmaceutical companies, government agencies and other research centers, and the patient community to identify new therapies.

Get support  

The effects of FA often cause patients to feel alone, but they don’t have to. There are support groups and ambassadors for patients who wish to meet in person with others, as well as online communities on which patients can connect with others.  These include Facebook, Twitter, and YouTube, in addition to multiple chat rooms and bulletin boards. The National Ataxia Foundation has collected this information in one place and patients are encouraged to check out their options.

To learn more, visit the Support/Connect  page of the National Ataxia Foundation or the FA page of the Brain Foundation.

This blog was written to provide helpful tools, information, and hope for the future. Here are a few key points to remember:

  • It can help to learn more about MD symptoms and treatment options
  • Having a care plan and team can help make sure all of your needs are met
  • Support groups can help you connect with other people living with MD



This blog was authored by a HealthEd/SurroundHealth contributor, Gillian Astarita.

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The rise of the “extenders”—but who are they?

“By the end of 2014, more than half of states were weighing expanding the clinical duties of nurses, physician assistants, pharmacists and others. Scopes of practice for these so-called ‘extenders’ will expand as the US healthcare system absorbs millions of newly insured consumers under the Affordable Care Act and stretches to care for a cresting wave of aging baby boomers.”

The excerpt above is from an article published in January 2015 by the PricewaterhouseCoopers Health Research Institute (PwC HRI). The engaging article captured the institute’s predicted top health industry trends for 2015. PwC’s eighth ranked trend was “Physician extenders see an expanded role in patient care.” This expansion is no doubt driven by the perfect storm of physician shortages combined with the intense wave of baby boomers who are entering the healthcare funnel. However, I wonder if we have clearly defined which professional roles fall under the extender umbrella.

Who are the extenders?

The quote above defines physician extenders as “nurses, physician assistants (PAs), pharmacists and ‘others.’” The term others seems nebulous to me.

In April 2013, we posted 2 blogs that described the expansion of the role of healthcare extender even further to include, “certified health education specialists, nurse-practitioners, registered dietitians, certified diabetes educators, nurses, pharmacists, patient educators, public health professionals, community health workers, and social workers, among many others.” Again—we see the term, others.

Do we need to formally define the extender role and its competencies?

The PwC HRI asserts that extenders are growing in numbers and roles are expanding. In a recent HRI survey report, we learn that:

  • Three-quarters of consumers supported this shift and stated that they would be comfortable seeing an extender
  • One-third of doctors believed that half of their clinical encounters could be managed by extenders

According to the HRI, physicians feel that extenders allow them to “spend more time with patients, better coordinate care and enjoy more work-life balance.”

However, this shift has not come without detractors. In the same HRI survey, some physicians said that they “remain reluctant to cede patient care to other clinicians.” The core barrier for these doctors seems to be “turf battles over who should treat patients—and where.” In fact, the American Medical Association contends that nurse-practitioners and other clinicians lack the needed medical training to fully diagnose patients.

Am I a healthcare extender?

I have worked in the healthcare industry for 25 years in multiple roles and settings. In the early part of my career, I worked directly with patients/families, and my titles included, “psychiatric technician,” “activities therapist,” “child life counselor,” “group home coordinator,” “director of education,” and “special care center manager.” Was I a healthcare extender during this time”? I believe that I was because my work supported and extended the treatment plan developed by the healthcare provider. I assisted with personal care and therapeutic activities that improved the physical and psychosocial well-being of the patient and his or her family caregivers. If I didn’t do my job well, the health of both the patient and family caregivers’ would suffer.

In the second half of my career, I shifted to health education and instructional design. I don’t currently work directly with patients, so am I still considered a healthcare extender?

Are you a healthcare extender?

I hope that this blog contributes to the important, provocative dialogue related to the role of the extender. Please join this dialogue by adding your title, a brief description of your role, and your opinion on whether you identify with the healthcare extender role. To connect with more than 6000 healthcare extenders, please visit our online extender social network community at SurroundHealth.net. Membership is free, and you can benefit from discussions, articles, blogs, and resources that improve outcomes for all.


NP Core Competencies Content Work Group. National Organization of Nurse Practitioner Facilities. Core Competencies Content. 2014. http://c.ymcdn.com/sites/nonpf.site ym.com/resource/resmgr/Competencies/NPCoreCompsContentFinalNov20.pdf. Accessed February 2, 2015.

Greene, J. HealthEd Blog. 7 reasons you need to get closer to healthcare extenders. 2013. http://healthed.typepad.com/healthed-blog/healthcare-extenders/. Accessed January 31, 2015.

Centers for Disease Control and Prevention. Indicators Spotlight: Health Care Extenders. (2013). http://www.cdc.gov/dhdsp/docs/health_care_extenders_indicators.pdf. Accessed January 31, 2015.

PricewaterhouseCoopers Health Research Institute. Top health industry issues of 2015. http://www.pwc.com/us/en/health-industries/top-health-industry-issues/index.jhtml. Accessed  January 31, 2015.

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Predictions: 3 Public Health Hot Topics for 2015

2014 proved to be a big year for public health—ACA implementation, the Ebola epidemic, soda tax, and more. While many of last year’s hot topics will continue to flow into this year and many unpredictable events are to come, it’s interesting to put forth a few predictions. Tammy Pilisuk, MPH, valued SurroundHealth member, pulled together her thoughts on upcoming innovations, scientific advances, policies, and programs.

3 of Tammy’s Top 10 Hot Topics—A sneak peak

1) New Vaccines

  • Ebola Vaccine. Likely the most fast-tracked vaccine trials ever, I’m not the only one predicting that we’ll see an ebola vaccine in 2015. Together with infection control protocols established for the affected West African countries, this will hasten the end to what had seemed an intractable crisis—though we’re not likely to snuff out ebola completely within the year.
  • HPV Nonavalent Vaccine. Merck’s nine-valent HPV vaccine received FDA approval in 2014. It’s very likely that this will replace, or partially replace, their current quadrivalent (4-valent) version. The newer vaccine will increase the percentage of cancer-causing HPV types prevented from 70% to 90% and potentially prevent tens of thousands of cancers per year. It may only need 2 doses instead of the current 3. The Advisory Committee on Immunization Practices (ACIP) should make a recommendation in the first half of 2015 with rollout later in the year.

2) Regulating E-Cigarettes. It’s not just steam! Health consequences of e-cigarettes including second-hand nicotine inhalation, have been found. There’s a good bit of evidence showing concern for e-cigarette use. So far, they are largely treated as a “safe” substitute to smoking. I predict this tide will turn soon. We should see more movement to regulate e-cigarettes, just as other tobacco products are regulated. A 2014 WHO-funded paper lays out regulatory recommendations and APHA also just took a support position on regulating e-cigarettes. SurroundHealth members shared their thoughts on the regulation of e-cigarettes—see what they had to say.

3) Building Healthy Communities. This looks super exciting, BuildHealthyPlaces.org is launching a new initiative to help communities thrive based on principles of social determinants of health. Let’s give them some time to spread their wings during 2015 and beyond. Interested in this topic? Check out our SH article about building healthy communities.

Check out the full list on SurroundHealth. Based on what you see in your work environments and in interactions with patients, clients, and peers—how do you feel about the predictions shared? Are there areas that you think public health will make great strides in the coming year? What public health challenges do you see coming in 2015? Share your thoughts with us below or on SurroundHealth!

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Holiday wishes from SurroundHealth…

Wishing you and your families a safe, healthy,

and happy holiday season!

We look forward to continuing the journey with you in the New Year. Until then, here are a few resources to help you review & start planning for a healthy year ahead:

A  detailed public health review by member, Tammy Pilisuk, MPH:

Two articles shared by member, Patricia Hernandez, MPH, MSW, CHES to help you get crackin’ on a great 2015 self-care plan:

All the best & “see” you next year—

The SurroundHealth team

SH_happy holidays_2014

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Planning for a Healthy Year: 3 Tips for Self-Rejuvenation

In preparing to close out the year, many people may be reflecting on the past 12 months, and beginning to plan for an even better—mentally, physically, emotionally, and professionally—new year. During this time, it is important to keep in mind helpful tips for self-rejuvenation.  Shared below are a few self-care tips from member, Paty Hernandez, MPH, MSW,CHES, featured in our latest SurroundHealth article. We hope that you take these into consideration to help you fuel a healthy 2015 self-care plan!

1. Eat slower, mindfully. With many heavy holiday meals just around the corner, it’s important to make sure to avoid overindulging. Author Lilian Cheung identifies and explains the following 7 practices for mindful eating in this video below:

  • Honor the food
  • Engage all the senses
  • Be mindful of portion sizes
  • Chew
  • Eat slowly
  • Do not skip meals
  • Eat a plant-based diet

Lilian Cheung_Savor Mindful Eating

2. Create goals and stick with them. Coming up with New Year’s resolutions are quite popular during this time of the year. For best results, make sure to support your goals by creating a step-by-step plan and identifying people who can encourage you along the way.

3. Incorporate Daily Health Challenges. Paty suggested using an interactive daily challenge platform to help you complete various straightforward challenges on a daily basis. This specific platform allows you to share your progress with family and friends—encourage them to take part as well!

For the full list of self-care tips, visit us on SurroundHealth!

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