The Children of Medicaid

This article was originally published on Complex Child. 

Compiled by Susan Agrawal

I’ve been continually surprised by how many people think Medicaid is just for poor families on welfare. Those of us who parent children with complex medical needs know that Medicaid is so much more than that. After all, 72% of Medicaid enrollees are children, people with disabilities, and the elderly, and these groups account for 84% of spending.

Medicaid provides vital services for children, including home nursing care and therapies, that are not otherwise covered. In this article, we will share just a few of the children with medical conditions who have received life-changing benefits, thanks to Medicaid.

Carter

Diagnosed with spastic quadriplegic cerebral palsy and associated conditions, Carter requires a tracheostomy and ventilator to help him breathe. He is covered by both private insurance and Medicaid through the state of Wisconsin. Initially, he participated in an optional Medicaid program for children with extraordinary needs called a Katie Beckett waiver, but he now receives services through a Medicaid waiver for children with physical disabilities. Carter has significant physical disabilities and medical needs that make him fully dependent on his caregivers, but is cognitively intact.

Medicaid has paid for part or all of Carter’s surgeries, medications, durable medical equipment, formula, and occupational and physical therapies. Even more importantly, it provides coverage for home nursing, allowing Carter to maintain the same two independent nurses for the past 12 years.

Medicaid allows Carter’s mother, Kathy, to work part time and take care of her other children. As Kathy says, “Without these programs, despite both of us working, my husband and I would be financially bankrupt and our son would have to go without many of the surgeries, medications, and supplies that improve his quality of life.”

Johnny

Johnny is an adorable little boy who is the only person in the United States diagnosed with Maple Syrup Urine Disease (a metabolic disorder) and Cystic Fibrosis. Like many children with complex medical conditions, Johnny has both private insurance and secondary Medicaid, through a state-based loophole in Pennsylvania that ensures children with extraordinary medical needs have access to Medicaid.

While private insurance pays the bulk of his expenses, Medicaid covers special medications related to his rare condition and other special therapies. It also covers his substantial out-of-pocket insurance expenses, such as copays and deductibles. His medications and therapies are life-saving for him, and without Medicaid, he would not have access to them.

Simply put, Medicaid keeps him alive.

Ikaika

Ikaika is diagnosed with CHARGE association, a genetic condition that comes with a wide range of congenital medical conditions. He also was born with a hole between his esophagus and trachea, has a feeding tube for nutrition, and had a tracheostomy tube to help him breathe for the first eight years of his life. Currently, Ikaika has private insurance plus a secondary Medicaid waiver, due to his extensive medical needs.

During the time Ikaika had his trach, Medicaid paid for home nursing care, allowing his mother to return to work full time. Medicaid also covers his school-based nursing services, his therapies, his feeding therapy, his     feeding tube formula, and his feeding tube supplies, all of which are not covered by his private insurance. In addition, Medicaid pays the bulk of the cost for his specialized bone conduction hearing aids. If he didn’t have Medicaid, he would be denied the fundamental right to hear. His family would literally be drowning in debt from his uncovered medical expenses.

Ikaika will likely outgrow many of his medical needs as he gets older, and will grow up to attend college, have a family, and pay taxes. As his mother Amanda says, “Ikaika is thriving and growing into a caring, responsible, co ntributing citizen of our country and the world.”

Medicaid allows Ikaika to hear, attend school, and thrive!

Jojo

Born with complex congenital heart defects and heterotaxy syndrome, Jojo was previously covered by private insurance. But the severity of his medical needs forced his mother Elizabeth to leave her job, which left h im uninsured. Thankfully, he was able to receive Medicaid plus additional services through California Children’s Services (CCS), a special program for children with qualifying medical diagnoses.

Currently, Medicaid pays for his primary care, specialty care, surgeries, hospitals stays, feeding tube, formula, physical therapy, and developmental therapy. Jojo is able to have all his need s me t between Medicaid and CCS.

As his mother says, “Medicaid has allowed Jojo to not only survive, but thrive, because it means we don’t have to worry about how to afford quality care. Caring for a medically complex child is stressful enough as it is, but the Medicaid program has given us some peace of mind.”

Mason

Mason was a charming young man adopted from foster care, who passed away in 2015. He was diagnosed with cerebral palsy, and was nonverbal, used a wheelchair, and had a feeding tube. Like many foster kids with complex medical conditions, Mason had been hard to place, and did not find a permanent home until age six. His adoption was only possible because it came with a guarantee of Medicaid coverage, which covered most all of his medical expenses.

He participated in a special Medicaid program called Consumer Directed Community Supports that allowed his family to purchase necessary medical equipment, helped to make his home wheelchair accessible, and paid for his feeding supplies, medical formula, diapers, and medications. In addition, this program paid for personal care aide hours, allowing his mother to continue working part time. Medicaid also helped the family with travel expenses, which w ere especially important when Mason was hospitalized for months four hours away from home in the last months of his life.

Medicaid allowed Mason to have an adoptive family for the last two years of his life.

Miracle

Miracle is exactly what her name describes—a miracle child. Diagnosed with VACTERL Syndrome, a collection of congenital defects that affect almost every body system, Miracle has many medical needs that cannot be met by insurance. She is covered by both private insurance and Medicaid. For example, she requires a feeding tube, as well as ongoing feeding tube supplies and formula, but her private insurance does not cover these expenses. Medicaid also cove rs her home-based therapies, such as physical and speech therapy.

As her mother Destiny says, “Medicaid gives us less stress knowing we won’t be in dire financial situations with household and medical bills.” Miracle’s needs require around-the-clock attention, but Medicaid makes it possible for their entire family to live healthy, productive lives, with lots of love and attention.

Medicaid helps Miracle’s family to avoid financial ruin.

Emma and Lily

Identical twins Emma and Lily were born with a mosaic form of Down syndrome that affects them very differently. While both girls have fantastic private insurance, they would still have hundreds to thousands of dollars of medical and therapy bills per month without Medicaid.

Initially, both girls had Medicaid, but now only one requires it due to her ongoing medical needs. It pays for her occupational therapy, speech therapy, and physical therapy. It has also helped cover the costs of specialty care, including visits to an endocrinologist, ophthalmologist, audiologist, and feeding specialist. Finally, Medicaid has paid for important home medical equipment, such as a nebulizer, that keeps one twin with ongoing lung infection issues at home instead of in the ER or hospitalized.

Medicaid means that Emma and Lily’s mother Lauren is financially able to stay at home to care for them, taking them to medical visits and being available for weekly therapies. As Lauren says, “It helps us to thrive as a family and get wonderful medical care and therapy for our daughters!”

Aiden

Aiden has an excellent private insurance plan, but it still does not meet his needs. Diagnosed with cerebral palsy, alpha thalassemia x-linked mental retardation, and many associated medical conditions, he requires multiple therapies and personal care services that his insurance does not cover. Fortunately, his medical condition qualifies him for a Texas Medicaid waiver program, allowing him to have access to Medicaid coverage for therapies, personal care services, and other benefits.

Aiden has recently seen cuts to his Medicaid services, since Texas received a waiver of a federal law that now allows Aiden to be placed in a managed care program. His state has already cut his therapies by two hours per week. It has already become challenging to cut through the red tape in order to receive the services he needs.

Aiden’s story shows the importance of a strong Medicaid program with appropriate federal regulations that make sure he receives all his medically necessary care.

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Bohemian, Er, I Mean Health Tech Rhapsody

This post was originally published by Venture Valkyrie on April 2.

By Lisa Suennen

In my nearly 20 years in healthcare venture capital, I have heard at least 37 million pitches for technology solutions to help patients be healthy, get healthy, stay healthy, One of the questions I most frequently ask entrepreneurs is this: What patient research have you done? How many potential consumers/customers have you interviewed to know there is a market for your wares? Guess what the most common answer to this question is? Wait for it…

None. That is often the answer. Seriously. Second place is “one,” as in “my grandma had congestive heart failure/fell and broke a hip/had a hangnail and so I built a whole company’s worth of product around her lone experience – behold my market of one!

It never ceases to amaze me. Do you think the folks in consumer products invent stuff that they don’t test with dozens and hundreds and sometimes thousands of consumers first? Answer: hell no. Even the drug companies have to do clinical trials and figure out what works. For goodness sake, health technology people, get in the game.

User-centered design is a pretty recent addition to the health care buzzword bingo board, but it’s a really important one. If you ascribe to the Field of Dreams strategy (if I build it, they will come), let me tell you how it ends: badly and surrounded by a bunch of very sad investors.

I finally snapped this week when I heard yet another of these stories; a young CEO was explaining their company’s new gizmo and telling me how it’s just what his grandma ordered. I was driving home from the meeting, one hand on the wheel, the other on my forehead, and one of my all time favorite songs, Bohemian Rhapsody, came on the radio. And suddenly I knew: it was the perfect song to tell my story of the importance of consumer input and user-centered design to the world of health tech entrepreneurs. So behold! and with due credit to Freddie Mercury and Queen (long may they reign), I give you: Health Tech Rhapsody (and if you want the tune in your head while you read, I’ve given you the song at the bottom to play along – you’re welcome).

Health Tech Rhapsody

Is this my real life?

Is this just fantasy?

Here on the inside,

I see ventures sans reality.

Open your eyes,

Look out at who’s sick and see,

Patients need service, not just technology,

Good health is easy come, easy go,

Pressure high, T cells low,

Getting sick really blows, experience really matters, you see

Grandma, just use this phone,

Sure you’re lying there in bed,

With that pounding in your head.

Grandma, don’t become undone,

Because you can’t read the screen anyway!

Hey Startup CEO -oo-oo,

Now you’ve made the patient cry,

Your product, no delight, just brings ‘em sorrow

Carry on, carry on as if users just don’t matter

Too late, your sales don’t come,

User-centered design,

Ignore it and sales decline

Goodbye, revenue, nowhere to go,

Gotta realize you’re behind and face the truth.

Patients, ooh (getting sick really blows),

They heave a heavy sigh,

And sometimes throw your gadget against the wall.

(wicked guitar solo)

I got a fancy high tech sensor for my home

What the hell, what the hell, where does this little plug go?

Pushing, snapping, swiping

Very, very annoying me.

(Hell No) Hell no.

(Hell no) Hell no,

How do they expect me to know?

Where is the nurse -o-o-o-o.

If you’re in health tech, patient input is key,

Not just a time suck, essential actually,

Spare users the pain of a tech atrocity

Takes time, yes I know, but don’t let it go.

Consumer: This damn thing loads too slow. (Now you know)

Consumer: Don’t want my kids to know. (Now you know)

Consumer: Won’t wear it if it shows. (Now you know)

Wait, how much do I owe? (Now you know)

Never, never let it go

Never let it go, oh.

No, no, no, no, no, no, no.

Oh, you anxious health tech C.E.O (Trust me don’t let this step go.)

Consumer input matters, take this advice from me, from me, from me.

(wicked guitar solo 2)

So you think you can launch it and watch sales fly?

I’m telling you: heed my warning or they’ll never buy!

Oh, baby, can’t fight reality, baby,

Just gotta get out, just gotta go out and hear.

(Ooooh, ooh yeah, ooh yeah)

Patients really matter,

They can always see,

When you haven’t taken time,

To listen to what they really need

 

 

 

 

 

 

 

 

 

 

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How public libraries help build healthy communities

This blog was originally posted by Brookings on March 30, 2017.

By Marcela Cabello, Brookings Research Assistant, and Stuart M Butler, Brookings Senior Fellow – Economic Studies

They say you can’t judge a book by its cover. Increasingly in the United States, you also can’t judge a library’s value to its community by simply its books. Let us explain.

In a previous blog post, we’ve noted the importance of “third places” in strengthening communities – meaning those places that are neither one’s home (first place) nor workspace (second place). A range of such third places, from churches to beauty salons, play an important role in community building. They are the informal spaces that are often mainstays in a neighborhood, places where both random and intentional in-person relationships are made.

Several things are necessary for a particular place to play this role. Location and accessibility are important, of course. But so are trust and a sense of neutrality; they are usually the keys to success, whether the place is a house of worship, a family-owned diner, or a barbershop.

As the earlier piece explained, public spaces and buildings can become important and successful third places. And one particularly interesting, emerging and important example is the public library.

Public libraries exist in urban, suburban, and rural neighborhoods, and typically they have a long history in their community. According to a 2015 Pew survey, almost two-thirds of adult Americans say that closing their local library would have a major impact on their community. As Pew found, over 90 percent of adults think of public libraries as “welcoming and friendly places,” and about half have visited or otherwise used a public library in the last 12 months.

REIMAGINING THE LIBRARIAN

A reason public libraries are seen as such important third-place institutions is that they and their librarians have gradually taken on other functions well beyond lending out books. In many communities, librarians are also ad hoc social workers and navigators. They help local people figure out the complexities of life, from navigating the health system to helping those with housing needs. This “go-to” role has influenced library programming and events, with libraries providing advice and connections to health, housing, literacy, and other areas.

Other sectors, such as health care, increasingly see public libraries as a critical link to a community. For instance, the National Library of Medicine is helping local librarians to be more effective local navigators by regularly hosting webinars and training sessions for local librarians on how to navigate social services, aging, mental health, welfare and public assistance, housing resources, health care, and education and employment resources.

Of course, most librarians were not trained to handle many of the issues and requests they now encounter, such as providing guidance on resources for substance abuse and mental health issues. In response, some libraries have hired in-house social workers to help address the needs of visitors. San Francisco Public Library, where an estimated 15 percent of the library’s visitors are homeless, was one of the first. A case worker is able to do a full assessment, and help arrange case management and housing assistance, in a respectful and neutral safe space.\

ADDRESSING POPULATION HEALTH

Other cities have followed suit. A recent study from researchers at the University of Pennsylvania explains how Philadelphia’s libraries, as a trusted local institution, have partnered with the University to address population health and social determinants of health. With librarians now trained as “community health specialists,” the libraries offer programs and assistance for people of all ages and socio-economic backgrounds. In 2015, almost 10 percent of the libraries’ 5.8 million in-person visitors accessed specialized programs and assistance in such areas as nutrition, trauma and mental health resources, youth leadership and healthy behaviors. As the researchers conclude, “Libraries and librarians contribute two particular strengths to advance a culture of health: accessibility and trustworthiness.”

Many libraries have become front-line institutions in addressing the needs of the homeless. For instance, the Dallas Public Library in 2013 launched a Homeless Engagement Initiative. The emphasis is on making all library visitors feel welcome. The library runs a Homeless Engagement and Leadership Program (HELP) Desk where customers can obtain one-on-one assistance with job applications and resumes, food and housing referrals, legal aid, and library music and arts programs.

Libraries focus on a wide range of populations with particular needs, including seniors, veterans, and immigrants. The Hartford Public Library in Connecticut, for instance, has created The American Place (TAP), a free program that supports and assists new immigrants acclimate to their new city. TAP partners with community leaders and organizations to provide employment services, English as a new language classes, legal orientation programs, Know-Your-Rights forums, and referrals to other services, in five different languages. Meanwhile the Queens Borough Public Library in New York, has partnered with the Queens Health Network, the largest healthcare provider in the area, to design health-related and community-centered programming targeting the needs of its immigrant populations.

LIBRARIES AS KEY HUBS

In health care and other areas, libraries are combining the access and trust characteristics of a third place with a hub role in the community – using partnerships with other institutions to connect people with services and help. There are plenty of challenges with this role. Community needs and the requests of visitors are increasingly straining or overwhelming library funds; and although many libraries are retraining staff, achieving the appropriate mix of skills is difficult. But as the University of Pennsylvania study found, “public libraries are dynamic, socially responsive institutions, a nexus of diversity, and a lifeline for the most vulnerable among us.” More policymakers and government officials need to recognize this, and incorporate libraries into budgets and plans to build a culture of health and upwardly mobile communities.

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Women’s Health Activist Movement Global Announces “Big Idea” Challenge with $10,000 Prize to Improve Women’s Health in Western PA

 

 

 

 

 

 

 

 

 

The Pittsburgh chapter of the Women’s Health Activist Movement Global (WHAMGlobal) has issued a request for video applications for its 2017 “Big Idea” Challenge, which will award a $10,000 prize and the guidance of WHAMGlobal network members to a non-profit organization that identifies a strategy for improving women’s health and health equity in western Pennsylvania. The deadline for video submissions is April 30, 2017.

WHAMGlobal is looking for one-minute video submissions that outline a pressing women’s health issue in western Pennsylvania, as well as a solution for solving that problem. The categories for video submissions include:

  • Mental Health or Substance Misuse
  • Patient & Consumer Activation (safety, quality, access, equity)
  • Social & Environmental Determinants of Health
  • Violence
  • Women’s Health Issues

To learn more about the video submission criteria and contest timeline, please visit the WHAMGlobal website. To submit a video for the contest, please fill out this short online form. Organizations can submit multiple videos for consideration.

A group of independent judges will select the top video submissions, and finalists will pitch their idea for improving women’s health and healthy equity in Western PA during an event at the August Wilson Center on June 26, 2017.

To learn more about WHAMGlobal, visit www.whamglobal.org.

Connect with WHAMGlobal Online

Twitter: @WHAMGlobal

Facebook: www.facebook.com/WHAMGlobal/

YouTube

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New Tech Tonics Podcast: Jess Mega of Verily Actually Is Making the World a Better Place

This blog was originally posted on Venture Valkyrie.

J-Mega-PhotoJessica Mega, an accomplished cardiologist and now Chief Medical Officer at Alphabet’s Verily (formerly Google Life Sciences), says she joined the venerable Silicon Valley company to help patients. According to Jess, physicians who love patients need to lean into the tech world because great tech that doesn’t actually change care doesn’t have much of a chance, implying also that it doesn’t have much of a point.

Very early to the concept of what is now called Precision Medicine, Jess helped pioneer the idea of large scale patient data collection (e.g., a study with multiple countries, 1000 sites, 20,000 patients) while studying the individual effects of medications, such as Plavix among populations. She was early to the concept of joining genetic, clinical and phenotypic information together to inform medicine, a concept she has imported to Verily as they take on some of the most challenging clinical problems together with world class medical partners such as Novartis, Dexcom, J&J and the American Heart Association, among others.

Jess imbues her work with the enthusiasm of someone who feels that work is play and that a real contribution is possible every day. She brings the kind of empathy and humanity to Silicon Valley that makes the effective intersection of tech and healthcare seem not just desirable, but also achievable. She just may be making the world a better place.

We are delighted to host Jess on Tech Tonics today. You can listen to her interview by clicking below or find it on iTunes by clicking HERE or on the Connected Social Media website HERE.

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Before Thursday’s ACA repeal and replace vote – a throwback to 2012

Before Thursday’s ACA repeal and replace vote, we’d like to share a post from 2012, when Disruptive Women in Healthcare Founder Robin Strongin moderated a panel held by The Hill at the Republican National Convention on the future of health care policy. Among the panelists were former Sen. Trent Lott; Rep. Tom Price; Dr. Donald Palmisano, MD, JD, former president of the American Medical Association; and Sally Greenberg, Executive Director of the National Consumers League.

2012-08-29-GN-Strongin Robin-2

Check out the recap (with video) of that event:

http://www.disruptivewomen.net/2012/09/07/robin-strongin-disrupts-the-rnc/

 

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How the Wrong Medicaid Reforms Could Devastate Young People with Complex Medical Needs

This post was authored by Sophia Jan MD, MSHP; Ahaviah Glaser, JD; and Rebecca Kim. It was originally published by the Children’s Hospital of Philadelphia Research Institute Policy Lab blog

Current proposals to simultaneously repeal the Affordable Care Act (ACA) and reform the federal Medicaid program would be devastating to children and young adults with disabilities and complex medical needs. Even if the final ACA replacement plan continues to allow young people to stay on their parents’ insurance plans until they turn 26 – which is a benefit largely supported on both sides of the political aisle – the most medically complex among them rely on Medicaid because of the extraordinary level and cost of care needed.

Today, Medicaid covers 10.2 million adults and children with serious illnesses or disabilities whose health needs create significant financial burden for patients and their families. For example:

  • Medicaid pays for physical therapy, occupational therapy and speech therapy that children with cerebral palsy and other developmental disabilities may receive through school.
  • Medicaid covers private-duty nursing and assistive technology — such as ventilators, feedings tubes and communication devices — that children with disabilities may need to attend school and avoid placement in institutional settings.
  • Medicaid frequently fills in coverage gaps for privately insured children with disabilities since over one-third of insured children with disabilites report inadequate coverage.

These individuals and their families have much to lose with the Medicaid reform proposal currently on the table.

The Switch to Medicaid Per Capita Caps

The ACA replacement plan unveiled Monday night in the U.S. House of Representatives recommends converting Medicaid to a “per capita cap” program, which would provide states with a predetermined amount of funding for each Medicaid enrollee. This type of proposal also gives states more flexibility to decide Medicaid eligibility and service options. Far from a new idea, proposals to reform Medicaid in this way go back at least as far as 1981. Supporters have always presented these proposals as a way for the federal government to save billions of dollars and give states more control. Sounds good, so what’s the catch?

First, per capita caps endanger funding for medically complex children. Under a Medicaid per capita cap, the federal government will likely determine the limit of reimbursement for each child enrolled in Medicaid based on the average health care cost of a child eligible for Medicaid today. It is reasonable to assume that the reimbursement rate per child will be set fairly low, since children make up 50 percent of the Medicaid population, but only contribute to 20 percent of the program’s costs. This may leave insufficient funding for medically complex children whose health care costs are significantly higher than those of other children.

To illustrate, a Medicaid-eligible child costs Pennsylvania $3,561 per year on average. By contrast, a family with a child who has suffered spinal cord injuries may require over $7,000 per month for the mechanical ventilation keeping their child alive. Medicaid per capita caps would not account for the differential health care needs of this family and would shrink both states’ overall budget and ability to care for all children regardless of their health care needs.

Loss of EPSDT

Additionally, all children covered by Medicaid are at risk of losing essential health services they are currently guaranteed. Today, to receive federal funds for their Medicaid programs, states must provide insurance coverage and Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services to all children under 21 who qualify for Medicaid based on their health status or family income. EPSDT is a comprehensive set of screenings and preventive services that catch problems early, before they have the chance to escalate. States must also guarantee children have access to all treatment services that Medicaid providers deem medically necessary from these screenings and services.

EPSDT services, which were designed to meet the unique health care needs of children, could be eliminated with major cuts to Medicaid spending through per capita caps. This is because the financial burden of keeping people covered would fall to the states, which would have more flexibility to decide who qualifies for Medicaid and which services to cover. Medicaid coverage would, therefore, be on the negotiating table when states are faced with difficult budgetary decisions. Children with disabilities could lose access to essential services and, in all likelihood, would be left with no affordable insurance options that meet their health care needs. In Pennsylvania alone, over 13,000 people with intellectual disabilities are already waiting to receive Medicaid-funded services.

Impact on therapies children receive in school

For decades, Medicaid has also allocated funding to schools that provide special education and certain medically necessary services to children with disabilities under the Individuals with Disabilities Education Act (IDEA). By reducing federal spending and eliminating the possibility of adjusting funding levels based on changing needs, per capita caps would likely force school districts to compete with hospitals and health care centers for precious Medicaid dollars, and they’d likely take the most significant hit. Schools would be forced to pay for special education programs with funds allocated for general education, potentially reducing the amount of money available to pay for teachers, counselors, nurses and extracurricular programming for all students.

Potential Solutions

One way to decrease the potentially devastating impact that per capita caps will have on children with disabilities is to place children with disabilities and other medically complex conditions into a different category from their healthier peers, essentially creating a “high-risk pool” for Medicaid-eligible children. Alternatively, Medicaid-eligible children with disabilities could be grouped together with adults who also qualify for Medicaid due to disability, which may minimize loss of Medicaid coverage — and the requisite delivery of medical and nursing care services — that frequently occurs when emerging adults with disabilities transition from pediatric to adult health care services.

Lawmakers will confront many difficult decisions in the coming weeks and months, but whether to pursue reforms that will inevitably cut access to care for our most vulnerable populations should not be one of them. As Dr. Ezekiel Emmanuel wrote this week in his New York Times op-ed, “this would be even worse than going back to the days before the Affordable Care Act.” Sweeping cuts to a program that nearly half of all U.S. children — and most children with very complex medical conditions — rely upon for the health care they need to survive and thrive is not the answer. We must find thoughtful ways to improve the efficiency and quality of health care in order to achieve the shared goals of bringing down health care costs and improving health outcomes for everyone.

Rebecca Kim is an MD/MPH student at the University of Pennsylvania. She works with Dr. Sophie Jan and the Multidisciplinary Intervention Navigation Team (MINT) at CHOP on their efforts to improve transitions to adult care.

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In Honor of International Women’s Day 2017…

In Honor of International Women’s Day 2017, we give a shout-out to our Disruptive Women to Watch in 2017!

http://www.disruptivewomen.net/2017/01/30/17-disruptive-women-to-watch-in-2017/

aveyLinda Avey

Co-founder 23andMe and Co-founder and CEO, Curious Inc.

Biography

BrintonDr. Roberta Diaz Brinton

Inaugural Director, Center for Innovation in Brain Science, University of Arizona Health Sciences

Biography

CarrilloDr. Maria C. Carrillo

Chief Science Officer, Medical and Scientific Relations, Alzheimer’s Association

Biography

ComerMeryl Comer

Founding Board Member, USAgaistAlzheimer’s and President, Geoffrey Beene Foundation Alzheimer’s Initiative

Biography

CrooksDr. Glenna Crooks

Founder and CEO SageMyLife.

Biography

HallerStacy Pagos Haller

President and CEO, BrightFocus Foundation

Biography

HendersonMarsha B. Henderson

Assistant Commissioner for Women’s Health (OWH), U.S. Food and Drug Administration (FDA)

Biography

LangbaumDr. Jessica Langbaum

Principal Scientist, Banner Alzheimer’s Institute and Associate Director, Alzheimer’s Prevention Initiative

Biography

LathanDr. Corinna E. Lathan

Co-founder, Board Chair and CEO, AnthroTronix

Biography

LesserJill Lesser

President, WomenAgainstAlzheimer’s Network and Board Member, UsAgainstAlzheimer’s

Biography

MikulskiSenator Barbara Mikulski

Senator, retired

Biography

PfeiferDr. Andrea Pfeifer

CEO, AC Immune

Biography

PoslunsLynn Posluns

Founder, President and Board Chair, Women’s Brain Health Initiative (WBHI)

Biography

SeeleDr. Pernessa Seele

CEO & Founder The Balm In Gilead, Inc.

Biography

ElizabethTaylor2Dr. Reisa Sperling

Director, Center for Alzheimer’s Research and Treatment; Professor of Neurology, Harvard Medical School; Director of Clinical Research, Memory Disorders Unit, Brigham and Women’s Hospital and Director, Neuroimaging Program, Massachusetts Alzheimer’s Disease Research Center

Biography

TomainoDr. Concetta Tomaino

Executive Director and Co-Founder, Institute for Music and Neurologic Function

Biography

TomainoTrish Vradenburg

Founding Board Member and Vice-Chair, UsAgainstAlzheimer’s

Biography


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Gaming the System

This post was originally published by  The Health Care Blog  on February 11. 

As physicians ready themselves for the future of medicine under onerous MACRA regulations, it seems appropriate to glance into the future and visualize the medical utopia anticipated by so many.  Value-based care, determined by statistical analysis, is going to replace fee for service.

Six months ago, I received my first set of statistics from a state Medicaid plan and was told my ER utilization numbers were on the higher end compared to most practices in the region.  This was perplexing as my patients tend to avoid ER visits at all costs and can be found milling about in my parking lot at 7am on Mondays with their sick children waiting for my office to open.

I requested more detailed reports on ER utilization and was given a 20 page list with codes that needed to be hand matched to patient names.  Being a committed and diligent physician, I spent a random Saturday evening matching up 420 names to individual 15-digit codes after putting my children to bed.  Of my top 20 utilizers, only 8 were actually patients.  The remaining 12 had been “on my panel list” during the reporting period but had never set foot in my office.  Of the top 100 utilizers, only 42 were patients.  In the interest of accuracy, I requested they re-run the numbers using my patients only.  Mr. IT informed me the inaccurate panel would make no difference.  He might have failed statistics in college but who is keeping track. (more…)

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Super Bowl 2017

Founder and CEO SageMy™Life.

Founder and CEO SageMy™Life.

Regardless of whether your team won, you’ve no doubt been delighted, entertained and inspired by the commercials that aired last night. There are too many I liked to pick a favorite, but in the spirit of this blogspace, I yield my time and give my vote to Audi.

It’s a beautiful statement, to which I’ll add this. May he never have to explain to her:

  • Why she must pay more for access to health care than the men around her;
  • Why she – and not her male relatives or work colleagues – will need to leave the workforce to be an unpaid family caregiver, suffering a loss of income and retirement benefits; and
  • Why she may suffer unnecessarily because a women’s health didn’t get the attention it deserved.

Perhaps there are things you’d add to this list.

WATCH:


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Hostels for Hope: Easing the Burden for Women with Cancer

This article was originally published on www.impatientoptimists.org on February 2, 2017.

Sarah* is a 46-year-old mother of five and a cervical cancer survivor living in Tanzania. Survival wasn’t easy. She had to travel over 300 miles from her village to one of only two treatment facilities in the entire country; once she got there, she had no place to stay. Like Sarah, many of the over 10,000 Tanzanian women diagnosed with cervical or breast cancer each year face two major challenges – how to pay for transportation to the capital, Dar es Salaam, and where to stay for the duration of their treatment. For some women, the challenge is too great and they have no choice but to stay home and die. Others, like Sarah, make the difficult trip to the hospital, and struggle to survive through the treatment. Many sleep on the hospital grounds, or on the street, while being treated.

We at Pink Ribbon Red Ribbon believe that no woman should die of cervical or breast cancer, no matter where she lives. So we decided it was time for the women of Tanzania to have “homes away from home” near the country’s only two cancer treatment centers that could save their lives. We partnered with the American Cancer Society the Bush Institute HKS, Inc ., Southern Methodist University , and T-MARC Tanzania to sponsor the Hostels for Hope competition.

downloadWe challenged professional and student architects around the world to use fresh thinking, sustainable materials, and resourceful ingenuity to design safe, comfortable lodgings for women undergoing cancer treatments. And they responded! We received nearly 100 designs, and an esteemed jury chose six winners who will be announced on World Cancer Day , February 4, in Tanzania. The top two designs will be adapted according to the needs of the hospitals, and our hope is that they will be built in the coming year. (more…)

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Top 5 Misconceptions and Questions about Public Health Tech

1. What is public health tech anyway?

lab-316553_960_720Public Health Tech, is any tech product or tech-enabled service that prevents the onset of disease or addresses the needs of medically vulnerable populations. This is an emerging niche of Digital Health growing due to the collision of digital health and public health. This collision has been catalyzed by two expanding pressures:

  1. Digital health failures: After a five year boom, 2016 was not a kind year to digital health. According to Rock Health, digital health VC funding made a slight dip to $4.2 billion after a record $4.5 billion in 2015. The overwhelming sense is that the party was over and the industry had entered the “trough of disillusionment.” A few of the factors that brought the over-exuberance down to earth were a renewed focus on evidentiary standards and a  reevaluation of the role of technology. Much of the boom was driven by sentiments that technology was the panacea even those most solutions were built around the fee-for-service model, that validation and claims would inevitably emerge with widescale adoption, and that the adoption of technology would inherently lead to reduced costs. None of these assumption have proven to be true.
  2. Public health spending crunch: Public Health spending had increased significantly from $39 per capita (inflation adjusted) to $275 per capita from 1960 to 2002, but a recent study has found that it has since been declining. Most of the increase in funding (approximately 80-90%) was a result of federal or local government spending. While the ACA in 2010 had originally committed $15 Billion in Public Health funding, it reduced that commitment by $6.25 Billion in 2012 and even further via sequestrations in 2013. Now with the new Trump administration, it is unclear how that funding will change, but if recent efforts to repeal the ACA are any indication, it is unlikely Public Health funding will see any relief in the near future and more likely will continue to experience significant cuts.

2. Public Health. Doesn’t that mean non-profits, government programs and impact investing?

Historically, Public Health has effected change through government agencies and community based organizations. However our healthcare system is changing at a rapid rate that makes it imperative to address needs in a scalable fashion. As fee-for-service begins to transition to value-based care, there will be renewed and growing interest and need on focusing on the biggest drivers of healthcare outcomes.

In 2016, my co-founder Marquesa Finch and I founded P2Health Ventures, the first venture fund investing in Public Health Tech companies. We invest in early-stage startups innovating solutions for population and/or preventative health. We also look for companies who are addressing health inequities, are committed to diversity within their teams and among the populations they serve, and who are implementing evidence-based product development.

As Public Health professionals, we know that access to care is a relatively minor driver. What’s most important is prevention. The United States spends only 3 percent of our health care dollars on preventing diseases (as opposed to treating them), when 75 percent of our health care costs are related to preventable conditions (APHA). This ratio largely holds true whether an individual is healthy or has an illness. Clinical care only drives 20% of our health outcomes. The rest comes from modifiable factors: health behaviors, physical environment and social and economic factors. These have historically been considered to be outside of healthcare from medicine’s perspective but this is the exact purview of Public Health. Adopting a public health lens to Digital Health and innovation opens up opportunities to effect significant and last change on the health of populations. (more…)

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17 Disruptive Women to Watch in 2017

DW Women to Watch 2017 - banner

Today, we are proud to launch our 17 Disruptive Women to Watch in 2017.  As is our custom and commitment to our thesis—Disruptive Women seeks to highlight women from a broad cross-section of disciplines, all of whom profoundly impact health and health care. This year we are doing something different. Given the enormity of the issues we are facing globally, when it comes to Alzheimer’s Disease and related dementias, we are focusing this year’s class of extraordinary women on those who are committed to ridding the world of this scourge. Lest you think this affects only the elderly (whatever that means), have a look at the sobering numbers and impact: start with our Brain Health series.

All of our 17 Disruptive Women to Watch in 2017 personify DW’s mission “to serve as a platform for provocative ideas, thoughts, and solutions in the health sphere.”

Disruptive Women in Health Care would like to take a moment to also salute our 16 Disruptive Women to Watch in 2016 and 15 Disruptive Women to Watch in 2015. (more…)

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Driving Progress in 2017

This article was originally published on January 26, 2017 in www.wewontwaitcampaign.org.

WWW-campaign

In the United States, a change of administration always brings uncertainty. With new leaders entering Congress and the White House, we at WA2 know we can turn that uncertainty into opportunity. Opportunity because we know finding a cure for Alzheimer’s and alleviating its burden on families can bring us together. WA2 is committed to continuing to lead a campaign to promote women’s brain health and fight against Alzheimer’s. 2017 is a critical year in our battle to stop Alzheimer’s in its tracks by 2020.

We are confident in the progress we will make because we know that our passionate partners and advocates can change individual lives and communities, intensify medical and private-sector responses, and shape the national policy landscape. Alzheimer’s is one of the few issues that cuts across party lines, affecting women and caregivers of all ages, races, creeds, and political beliefs. This widespread impact creates a shared basis for sustained action by women leaders across America, from caregivers and community advocates to legislators and executive leaders. This is the central strength of our movement.

To guide WA2 and our supporters, we would like to highlight the pillars of a concerted, nationwide effort to combat Alzheimer’s in the year ahead. This is an overall summary – we will explore each of these in greater depth throughout the year. If we dedicate ourselves to achieving these goals, and encourage others to join us, then 2017 will be a time of advocacy, awareness, and progress towards our goal of ending Alzheimer’s by 2020. (more…)

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There Will Never Be a New World Order Until Women Are a Part of It

This article was was originally posted on January 22, 2017, in Venture Valkyrie.

“There will never be a new world order until women are a part of it.”

Alice Paul

It has been, not just for me but for many, national women’s month. Maybe it’s not officially proclaimed as such, but it has just worked out that way.

It started for me the second week of January at the JP Morgan Healthcare Conference. What has been notable about this conference in past years is the absence of women. I even wrote about this in 2011 in a post called, “Alas, No Line for the Ladies Room,” in which I lamented the stunning absence of my sisters at what is arguably the most important healthcare business conference in the world. I recall noting that, back in 2011, attending JP Morganpalooza was like speed-dating but without the women in the equation, making it considerably less fun.

Suboptimal speed dating

There was a notorious event, hosted by LifeSci Advisors, at 2016’s JP Morgan conference which seems to have had the unintended consequence of waking the sleeping giantess. The firm hired a bunch of female models to entertain mostly male guests and blocked many women from attending. They were pilloried for it (I wrote about it HERE) and then massively apologized by pledging to get enlightened. Um, yeah.

But this year is apparently the year when the tide started to turn. I recall noting a sense of optimism last year, but this year, as I write this the day after the Women’s March that followed the 2016 election, I am hoping we are officially on an unstoppable pink train. Yes, it’s disturbing (to say the least) that the electorate has chosen people and policies that are decidedly anti-female. But this time, it provoked a disturbance in The Force that has roared back 2.5 million strong and growing. Can it be a coincidence that the biggest box office hits so in recent weeks are a) Rogue One, where a badass young woman leads the effort that results in the overthrow of the evil empire?  and b) Hidden Figures, a movie which honors the work of three young black female scientists, programmers and engineers at NASA without whom the space program may not have succeeded as it did.

As I watched the Women’s March from the sidewalk and from the TV screen yesterday, I couldn’t help but think that this women thing is for real and finally so. Even at JP Morgan, the tide seems to have turned. While in past years there was an event or two targeted to the dribble of women who attended the conference, this year there were at least 8 events that I personally heard of that were women-only and overflowing. Silicon Valley Bank, Deloitte, Canaan Partners, Wilson Sonsini, Women Business Leaders, Springboard, Square One Bank, GE Ventures and many others led events that were exclusively or primarily aimed at giving women a chance to celebrate their successes and network with each other. This is a massive upgrade over prior years and speaks to the number of women who showed up to do serious business at the conference this year. It was hard to miss the trend when in many other years it was hard to miss the oversight. A great thing. (more…)

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