Real World Health Care Blog

Tag Archives: Diabetes

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

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

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

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

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

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


Did You Know?

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


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

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

Karis and her new insulin monitor

Karis and her new insulin monitor

house and everything I own if I had to.”

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

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

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

HCUP: Potentially Preventable Pediatric Inpatient Stays for Asthma and Diabetes

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

Linda Barlow

Linda Barlow

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

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

New App Makes Diabetes Care Delivery a Whole New Ballgame

A father brings his son to a baseball game. The day is nice, the weather is good, but there’s one problem: the boy has Type 1 diabetes, and they forgot his test strips. Do they leave the game for home or a pharmacy? Do they wing it, risking the boy’s health and trying to manage his blood sugar with his diet?

Nathan Sheon

Actually, they opt for the third choice: HelpAround, a mobile safety net for people with diabetes. The
man can pull out his phone, see that there is another diabetes patient two sections down, and ask for the supplies his son needs. With that, the day is saved.

A story like that is how HelpAround began. Established in 2013, HelpAround was designed to bring people with diabetes together in a common space to provide not just peer-to-peer support, but peer-to-peer care as well. Using new mobile technology, the app provides a highly personalized account of treatment needs and matches patients accordingly with other patients who have similar needs.

According to Yishai Knobel, CEO and co-founder of HelpAround, the service fills in what is otherwise a gray area of diabetes treatment. People with diabetes face a large spectrum of constant health concerns that vary widely in severity. Not having test strips, for instance, might not warrant going to the hospital, but can be very serious for patients who need to constantly monitor their health. With an app like this to fall back on, according to Knobel, people with diabetes are able to live more normal lives knowing that they can get the help they need whenever they need it. “People with chronic conditions have so much going on, on top of their everyday lives,” he said. “Creating this social safety net is really something valuable.”

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Did you know that September is Childhood Cancer Awareness Month? One way to help pediatric cancer patients and their families who are faced with a devastating medical emergency is to donate to HealthWell Foundation’s Pediatric Assistance fund.  Click here to learn more and donate to help families in need.

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HelpAround also provides a less tangible but equally important factor for its patients: a sense of belonging to a community. Though he did not want to disclose numbers, Knobel said that in the early stages of the app’s launch, 85% of requests for help received a response. For people with chronic conditions, knowing that there is a dedicated support base by patients and for patients is invaluable.

“Connecting the right people at the right time in a system can create a wonderful moment of empowerment, support and comradery,” Knobel said.

With use of the app growing, patient groups for other chronic diseases have also begun to discuss using technology like this. With communication technology advancing and a growing call for more patient-centered solutions to health issues, Knobel believes that technologies like HelpAround will allow patients to manage their own health needs more efficiently.  Perhaps most important, the app helps patients stay compliant with their treatment schedule.

“We want to really give the patient a full support system, (helping them) on the go, focusing on their needs, to better manage their health care,” Knobel said.

Have you ever used HelpAround or a similar technology? What was your experience? What does this mean for the future of care-delivery and treatment compliance? Let us know in the comment section!

Categories: Access to Care, General

Get Your Flu Shot Now to Stay Healthier Later

So you think you’re too busy to get your flu shot? It’s easy to put off, but taking the time to do it sooner rather than later could prevent you from getting sick while helping to protect those you care about – during the holidays and beyond. That’s why the U.S. Department of Health and Human Services (HHS), the Centers for Disease Control and Prevention (CDC), state and local health departments as well as other health agencies are raising visibility around National Influenza Vaccination Week (NIVW), from Dec. 8-14.

Paul DeMiglio

Paul DeMiglio

With the flu season beginning in the fall and not peaking until January-February, it’s certainly not too late to get your influenza shot. In fact, the CDC’s Advisory Committee on Immunization Practices recommends that everyone 6 months of age or older receive it, including:

  • Children
  • Seniors 65 and older
  • Pregnant women
  • American Indians and Alaska Natives
  • Those with underlying health conditions like asthma
  • Those living with conditions including chronic lung disease, heart disease, HIV/AIDS, cancer and diabetes

Although the effectiveness of flu vaccination varies each year, the CDC reports that recent studies demonstrate the evidence-based public health benefits. The Mayo Clinic agrees, calling flu shots your best defense against the flu, enabling “your body to develop the antibodies necessary to ward off influenza viruses.”

“The single best way to protect against the flu is to get vaccinated each year,” said CDC’s Anne Schuchat, M.D., Director, National Center for Immunization and Respiratory Diseases. “Today, flu vaccines are available in more convenient locations than ever. The few minutes it takes to get a flu vaccine can save you from experiencing several unproductive days due to influenza. The most common side effects are mild and short-lasting, especially when compared to symptoms of influenza infection.  Flu vaccine cannot cause flu illness.”

Despite evidence that the influenza vaccine is an effective tool, some still fear that getting their shot might put them at risk for experiencing severe side effects. No more than one or two cases per million people vaccinated acquire Guillain-Barré syndrome, an outcome much lower than the risk of developing severe complications from influenza. From 1976-2006, in fact, estimates show that far more people died from flu-associated deaths in the U.S. (3,000-49,000) than from negative reactions to the vaccines that protect against influenza.

To build awareness and support of NIVW and encourage people to get their shots, the CDC is making a rich variety of online tools and resources available to a wide spectrum of patients, educators and providers, such as:

Partnering with Reckitt Benckiser, Inc., the makers of LYSOL® Brand Products, the CDC is also spotlighting the Ounce of Prevention Campaign, which seeks to empower consumers and professionals with practical tips and information around effective hand hygiene and cleaning habits to prevent infectious diseases like the flu.

Click here to see if the vaccine is available in your area. To find a nearby location to get the vaccine, check out HHS’s “Flu Vaccine Finder” on Flu.gov, enter your ZIP code and share the widget to let your family members, colleagues and friends know where they can go too. HHS also provides a series of informative YouTube videos that cover prevention strategies, share tips for identifying symptoms and provide recommended treatment practices.

You can also make a powerful statement by taking the pledge to get vaccinated for the 2013-14 season, commit to taking a friend with you and in the process spread the word by clicking here. To get the latest updates on flu vaccination efforts, follow the CDC on Twitter (@CDCFlu and @CDCgov) and “like” them on Facebook.

Now tell us if you’ve gotten your flu shot. Where did you go? How long did it take? What ways could providers and health care stakeholders more effectively remind patients to get vaccinated?

Make Life a Little Easier for Sick Children This #GivingTuesday

Cyndi from Midland, TX didn’t know how she was going to pay for the asthma medication her son Ethan desperately needed. Feeling like nothing was going right and not knowing where to turn, she was on the verge of losing hope. Then something dramatic happened that would change everything. Cyndi discovered the HealthWell Foundation:

Cyndi didn't know how she was going to pay for her son Ethan's (right) asthma medication until she found the HealthWell Foundation.

Cyndi didn’t know how she was going to afford asthma medication for her son Ethan (right) until she applied to the HealthWell Foundation for financial assistance.

Our son was born very sick. He spent 5 weeks in the NICU, 2 of which were on a ventilator. When we finally brought him home, we knew I had to stay home with him. If we put him in daycare, we knew he would get sick and that would be hard on his lungs. With me not working, it put a huge cloud over our finances. We quickly found out that his asthma medication was not cheap, even with insurance. I also found out that there isn’t a lot of help for people who have insurance and a decent job. I spent hours and hours on the Internet and the phone trying to find some help. One day I found HealthWell. We applied thinking we would be denied. The day I got the acceptance letter in the mail, I sat on the kitchen floor and cried. I felt a sense of relief. Finally, something was going right. We cannot be more grateful for all the help HealthWell has given us. 

When you give to HealthWell’s Pediatric Assistance Fund for #GivingTuesday, you will make a difference for children who have been diagnosed with a chronic or life-altering condition, just in time for the holidays. Every penny of your donation will help us provide financial assistance to patients so they can afford the rising cost of care:

  • To date, HealthWell has awarded more than 274,000 grants to insured adults and children across all of our funds to help them afford treatments.
  • In just two months, we awarded grants of up to $5,000 to more than 20 families.

No family should ever have to wonder whether they can afford to save their child’s life. By giving to the Pediatric Assistance Fund, you will help us remain a lifeline for families so they can afford life-saving treatment for their sick children.

Your gift will help ensure that families with children who have chronic conditions – including leukemia, cystic fibrosis, or juvenile diabetes – are not forced to choose between paying the bills and affording quality care. Here’s a breakdown of how donations, large and small, will have a tangible impact:

  • $10 covers the cost of diabetes test strips for Michael for one month.
  • $45 supports Yessenia’s pituitary hormone treatment for 1 week.
  • $75 covers Quinnlian’s lesion treatment for immunosuppressive disease for one month.

Start the holidays off right by donating to HealthWell for #GivingTuesday and make life a little easier for more families like Ethan’s. Your gift will make the season brighter for children and families struggling to afford the medications or treatments they need.

Categories: Cost-Savings

Advocates Unite to Prevent Type 2 Diabetes During National Diabetes Awareness Month

One in three. That’s the number of people in the United States who will have diabetes by 2050 if current trends continue. Twenty-six million Americans – seven million of which are undiagnosed – now live with diabetes and another 79 million have pre-diabetes. To raise awareness and spotlight effective prevention strategies, patient advocates are mobilizing to promote National Diabetes Awareness Month and American Diabetes Month® this November.

Paul DeMiglio

Paul DeMiglio

As a disease that constitutes one of the leading causes of death and disability in the United States, diabetes is a disease in which glucose blood levels are elevated above their normal range. Those living with diabetes are also at higher risk of heart disease and stroke. According to the Centers for Disease Control and Prevention (CDC), the risk factors for type 2 diabetes include:

  • Being 45 years of age or older
  • Being overweight
  • Having a family history of Type 2 Diabetes
  • Engaging in physical activity fewer than three times per week
  • Giving birth to a baby that weighed more than 9 pounds
  • Having gestational diabetes (diabetes during pregnancy)

Although type 1 diabetes cannot be prevented because people are born with it, individuals can lower their risk of developing type 2 diabetes through a variety of practical strategies. The CDC’s National Diabetes Prevention Program is an evidence-based program for preventing type 2 diabetes. A public-private partnership of community organizations, private insurers, employers, health care organizations and government agencies, it teaches participants how they can incorporate physical activity into daily life and eat more healthfully, helping them to:

  • Cut their risk of developing type 2 diabetes in half
  • Lose 5-7 percent of body weight through modest changes in behavior
  • Reduce the risk of diabetes in people with pre-diabetes by 5 percent

The program pairs people with a lifestyle coach, in a group setting, to receive 16 core sessions and six post-core sessions over the course of a year. These lifestyle coaches work with the participants to identify emotions and situations that can sabotage their success. The group process encourages participants to share approaches for dealing with challenging situations.

Along with their National Diabetes Prevention program, the CDC also provides a Registry of Recognized Programs that lists contact information for community resources offering type 2 diabetes prevention programs. The registry was created to help health care providers more effectively refer their patients to the services they need, while also empowering patients to find and choose the programs that are right for them. For more information about diabetes and other diseases from CDC, you can sign up for e-mail updates here.

The National Diabetes Education Program (NDEP) is also committed to raising awareness and providing resources around issues such as diabetes risk, family support, and community support. The goal of their campaign – Control Your Diabetes. For Life is to increase awareness about the benefits of diabetes control through education materials, fact sheets, sample articles and PSAs for radio, print and television. A major part of their focus is also placed upon bringing diabetes information to community settings such as schools, worksites, senior centers and places of worship.

“Although the prevalence of diabetes has continued to rise due to the obesity epidemic, the aging of the U.S. population, and increasing numbers of people at high risk for diabetes, there are strong, encouraging indicators of progress in preventing and treating diabetes,” said Joanne Gallivan, M.S., R.D., Director of NDEP. “Today, there is much greater awareness that diabetes is a serious disease, a critical first step in changing outcomes. In 1997, only 8 percent of Americans believed diabetes was serious. In 2011, 84 percent of Americans understood that it is a serious disease.”

The American Diabetes Association (ADA), which works to “raise awareness of this ever growing disease,” leverages American Diabetes Month® to illustrate how diabetes impacts Americans. By asking people to submit photos that show “A Day in the Life of Diabetes,” the ADA plans to create a large mosaic that demonstrates how diabetes affects patients, families and communities nationwide from personal perspectives.

“Participating in ‘A Day in the Life of Diabetes’ for individuals living with diabetes lets them know that the American Diabetes Association is the one leading organization that continues to do research to ‘STOP Diabetes,’ advocate and promote ‘Healthy Lifestyle Management’ to avoid many of the health issues that people with diabetes die from, such as heart disease or stroke, kidney failure, blindness, and amputations,” said Lurelean B. Gaines, RN, MSN, President of Health Care and Education of the Association. “The campaign has grown this year and will continue to grow because every 17 seconds someone is diagnosed with diabetes.”

To learn more visit ADA’s website at www.diabetes.org and click on Diabetes Basics, Living With Diabetes, Food Fitness, Advocate, In My Community, or News & Research.  Information is available in English and Spanish. You can also “like” ADA on Facebook, follow them on Twitter (@AMDiabetesAssn) or call them at 1-800-Diabetes.

How can your community more effectively collaborate with stakeholders like ADA, CDC and NDEP to prevent diabetes and help those living with the disease?

Not Your Mother’s Big Pharma

In a September 29 article in Adweek, Joan Voight demonstrates how the Affordable Care Act (ACA) is expected to create new opportunities for pharmaceutical stakeholders to play a more active, personalized role in managing patient care through interactive web-based tools. Three aspects of the ACA will change the way treatment decisions are made and reinvent how patients and Big Pharma interact.

Paul DeMiglio

Paul DeMiglio

Fill the Primary Care Gap
Although providers will be overwhelmed by an expected uptick in newly insured patients, pharmaceutical companies can help reduce the strain while strengthening relationships with consumers in the process. MerckEngage — an online educational and marketing program that has attracted 8.2 million visits since its launch in 2010 — is one example of just how this can play out. Among some of the resources the website gives members access to include:

  • Free personal health tracking
  • Daily planners
  • Food and exercise tips
  • E-mail messages
  • Content updates

Doctors who sign up will receive alerts to track their patients’ activity, and starting this year the program also features mobile versions for patients and providers alike.

Provide Solutions to Adherence Challenges
A key goal of the ACA — to prevent sick patients from developing more serious conditions and needing more care — emphasizes the importance of increasing medication adherence. This need presents a valuable opportunity for pharma to personalize treatment and communicate in ways that resonate effectively with target audiences.

AstraZeneca is collaborating with Exco InTouch to help patients and doctors track and manage chronic conditions through mobile and web-based tools:

“The first app addresses chronic obstructive pulmonary disease. Patients enrolled in the program collect, transmit and review their own clinical data, while their doctors use real-time information to personalize each patient’s care, adjust meds and possibly prevent hospitalization. The patients’ identifiable data is only seen by patients themselves and their healthcare providers, says AstraZeneca,” the report notes.

Develop Innovative Bundles
Implementation of ACA will also change the way prescriptions are made, with insurance companies and accountable care organizations (ACOs) choosing what to prescribe instead of individual doctors. This can serve as an opportunity for pharma to build support among ACOs by creating and branding a package of services for patients and providers that spans behavior modification, education, tracking and dispensing of drugs.

Eli Lilly’s online diabetes program that helps patients and families manage the disease, Lilly Diabetes, was critical to paving the way for this marketing approach, according to the article:

“In Lilly’s case the tools include a meal planner, a self-care diary, a carbohydrate tabulator and even an emergency guide in case of hurricanes or earthquakes.”

Now we want to hear from you. Do you agree with the article? What are the long-term implications of pharmaceutical companies having access to more data about consumers in this new era of digital outreach? What might be the potential advantages and disadvantages?

Kaiser Permanente Gives Providers Evidence-Based Tools to Increase Adherence

At an industry conference years ago, I met an HIV-positive patient. We spoke about her treatment as well as her adherence program. “Who takes care of you?” I asked. “Kaiser Permanente,” she responded. Afterward, I did a little research and discovered this was one of the first HMOs created in the United States that takes care of millions of patients. Based in Oakland, California, their goal is “supporting preventative medicine and attempting to educate its members about maintaining their own health.”

Joel L. Zive

Joel L. Zive

Adherence remains a capstone in caring for patients after medications are dispensed and is an especially important issue for indigent populations. But now with implementation of health care reform fast approaching, patients will be required to take even more responsibility for their health, including adherence to medication regimens. Although no integrated health care structure is perfect, Kaiser’s integrative model fascinates me and allows its health care teams to implement successful adherence strategies.

For example, a Kaiser physician at the South San Francisco Medical Center conducted a hypertension study (“Improved Blood Pressure Control Associated With a Large-Scale Hypertension Program”) that compared their program’s results to those at the state and national level. The outcomes are startling:

  • The Kaiser Hypertension control rate nearly doubled, skyrocketing from 43.6 percent in 2001 to 80.4 percent in 2009.  
  • In contrast, the national mean of hypertensive control went from 55.4 to only 64.1 percent during the same time period.

One aspect of this program included using single pill combination therapy, which has been shown to boost adherence. In a slightly different approach to adherence in hypertension, Kaiser Permanente Northern California and UC San Francisco were recently awarded an $11 million grant to fund a stroke prevention program by targeting and treating hypertension among African Americans and young adults.

By Googling “Kaiser Permanente adherence” the Kaiser Permanente Division of Research appears. Their published research draws from Kaiser Permanente units throughout their network, collaborations with academic institutions nationwide, and the HMO Research Network – a consortium of 18 health care delivery organizations with both defined patient populations and formal, recognized research capabilities. These resources provide clinicians and pharmacists with a plethora of study designs and disease states from which to choose and evaluate.

In the study “Determination of optimized multidisciplinary care team for maximal antiretroviral therapy adherence,” for example, a multidisciplinary care team was assigned to patients with new antiretroviral drug regimens. Because this model translated to improved adherence rates, clinical teams around the country now use some variation of a multidisciplinary approach, enabling each discipline’s area of expertise to benefit the patient.

Another article from Kaiser — “Health Literacy and Antidepressant Medication Adherence Among Adults with Diabetes: The Diabetes Study of Northern California (DISTANCE)” – demonstrates that adherence is multifactorial.  This study’s conclusions underscore the importance of health care literacy components, simplifying health communications for treatment options, executing an enhanced public relations campaign around depression and monitoring refill rates.

In my experience, if someone with mental health issues does not take his or her medications, then regardless of disease state, the patient’s treatment falls off the track. I approach these difficult situations by drawing on the conclusions of the above studies:

  • First, is there a different message I could give the patient? Or am I reaching the patient at a level of health care literacy he could understand? For example, I had a deaf patient who found it tiresome writing messages back and forth to me. When I realized he “speaks” to people via a teletype machine, I began communicating with him via word processing software. This made our communications less cumbersome. And this improved adherence to his regime because he was less frustrated.
  • Next, the multidisciplinary approach is quite powerful. When I served HIV-positive patients in the South Bronx, if anything occurred that affected adherence, the prescriber, nurse, social worker or case manager immediately were made aware. Sometimes we would discontinue the regimen and other times we would tweak the regimen and get the patient back on treatment.

The real adherence tragedy for indigent patients is not whether they receive medication, but whether they have access to the tools, education and knowledge they need to take their meds as prescribed. Leveraging articles from resources like Kaiser’s Division of Research may be the solution to reversing the trend of low adherence.

Now we want to hear from you. If you’re a patient, has your doctor or pharmacist worked with you to improve med adherence? If you’re a provider, what resources have you found to be useful when helping patients understand why they should take meds as prescribed? Share your stories in the comments.

Categories: Access to Care

Patient Venture Philanthropies: Catalyzing the Development and Delivery of Therapeutic Breakthroughs

Linda Barlow

Linda Barlow

How are patient-focused organizations making tangible advances in creating life-saving and life-enhancing therapeutic innovations? The experiences of at least two foundations show that collaboration with stakeholders across industries – private, government, academia, insurers and clinicians – is a good place to start.

One example of success is JDRF (formerly the Juvenile Diabetes Research Foundation), the only global organization with a strategic plan to systematically eradicate the effects of type 1 diabetes (T1D) from people’s lives. As a foundation with cure, treatment and prevention strategies that drive the core of its mission, JDRF funds $530 million in scientific research across 17 countries. JDRF’s highest priority is funding research to deliver a cure for T1D and its complications. It is also committed to:

  • Developing better treatments that will transform the way people of all ages with T1D treat the disease at any stage, in order to help them live healthier lives; and
  • Preventing T1D, to keep future generations from developing the disease.

JDRF focuses its funding on therapies and devices that are truly impactful, either in the sense of bringing something to market more quickly or by reaching the largest possible number of patients.

“The challenge is bigger than we anticipated,” according to Jeffrey Brewer, President & CEO of JDRF. “We remain committed to a cure, but are also focused on helping patients live safely and well until a cure comes, through preventive and treatment strategies and treatments.”

Brewer says that JDRF has started working more with industry, noting that historically, the organization focused on academic-based research.

“Forty years of advances in the academic labs has given us the opportunity to translate developments in the labs to companies that will develop therapies to deliver to people,” he says. “Academic research is a critical early component in the pipeline, but company support is also a critical part of the pipeline. That’s why we incentivize companies to do things they otherwise wouldn’t have done.”

“JDRF is willing to take on more risk at an early stage than pharmaceutical companies,” adds Dr. Richard A. Insel, M.D., Chief Scientific Officer, JDRF. “We also are not driven by profit margins or market size. We act as a sort of virtual pharma or biotech company in the early stages of research, and our industry partners step in to bring therapies and devices to market.”

Brewer explains that once companies are able to successfully commercialize therapies and see a financial return, JDRF is “paid back” by those companies, with funds JDRF drives back into more therapeutic research.

“We also work closely with our industry partners and the government, particularly the National Institutes for Health, to make sure resources are being used most effectively and without duplication of effort,” says Insel. “And we work with regulatory agencies to help them better understand what it is like to live with type 1 diabetes so they can evaluate the risk and benefits of new therapies with an eye toward approving them as quickly as possible.”

The Alzheimer’s Drug Discovery Foundation (ADDF) also focuses on prevention, treatment and cure. Using a venture philanthropy model to bridge the worldwide funding gap between basic research and later-stage drug development, ADDF leverages any return on investment to support new research.

The result? ADDF has granted more than $60 million to fund over 400 Alzheimer’s drug discovery programs and clinical trials in academic centers and biotechnology companies in 18 countries.

“Our biomedical venture philanthropy model adapts the operating principles of venture capital investing to the ADDF’s philanthropic mission to advance biomedical research in Alzheimer’s disease. We seek a return on investment for our grants based on the achievement of scientific and/or business milestones. When these milestones are met, funds come back to the Foundation to increase our ability to fund more research,” according to the Foundation.

Source: Parkinsons Action Network

Source: Parkinson’s Action Network

Dr. Insel argues that the participation of patients and families in clinical trials is crucial to translating funding research into impactful therapies.

Do you agree? What other ways can patients living with type 1 diabetes, Alzheimer’s disease or other chronic disease act as advocates for themselves and the disease in general? What other patient venture philanthropy models have you seen work?

With a Little Help from My Friends, Family… And Apps

“Drugs don’t work in patients who don’t take them.” – C. Everett Koop, former Surgeon General

It was an idea born of near tragedy: an elderly, diabetic father who double-dosed on his insulin therapy and suffered a medical emergency. His two sons realized that if they were more involved in reviewing their father’s daily medication and insulin regimens, it could change his behavior for the better and help him get healthier.

MedicineCabinet (5)

Photos courtesy of NextGen Healthcare

So Omri and Rotem Shor co-founded the MediSafe Project, a free mobile app that makes it easier for families and friends to give the support needed to help their loved ones get healthier and integrate healthier behavior modification into their everyday lives. In the first four months after its launch, users reported medication adherence rates of 79 percent (82.25 percent for statins) – well above the 50 percent average medication adherence rate reported by the World Health Organization.

The MediSafe Project provides an easy-to-use interface – an interactive pillbox of sorts — over iOS and Android mobile phones. Users input information about their meds by typing their names or photographing their National Drug Code numbers. The system stores the correct pharmaceutical name, manufacturer and dosage, ensuring an error-free medication list in the event of a medical emergency. Users signify taking their meds by dragging pills from the virtual pillbox into a mouth icon, which “swallows” the pills.

Users receive alerts before medication courses are completed, allowing them to order refills in a timely manner. In addition to reminding users when it’s time to take their medication, the MediSafe Project sends alerts to selected family members, friends and caretakers when a loved one misses a dose. Users can also email a personalized list of adherence stats to their doctor, giving doctors better patient oversight between office visits. A prescription page feature lets doctors “prescribe” the MediSafe project to their patients to help better monitor medication adherence.

The impact of non-adherence on the outcomes of patients with cardiovascular diseases is one example that underscores why it is so critical to implement strategies and utilize technologies that improve medication adherence.

“Medication non-adherence is a problem that costs U.S. hospitals billions of dollars every year,” says Omri “Bob” Shor, CEO, MediSafe. “An American dies every nineteen minutes from skipping or taking medication incorrectly. Our goal is to help combat this problem and encourage healthy habits among users and their support systems with easy-to-use technology.”

The MediSafe Project isn’t the only app on the medication adherence scene. The free NextGen® MedicineCabinet app lets users create and update a list of medications, including dosing and schedule information, thus creating their own “personal” medication record.

Notifications are sent for each medication and users can confirm adherence. The app was designed, in part, to improve adherence and proper use of medication by enhancing patients’ understanding of how to correctly take their medication and to recognize adverse reactions. According to the company, it also equips health care professionals with all the relevant information they need, in a way they like to view it.

“Mobile patient engagement is at the forefront of today’s changing health care environment,” said Ike Ellison, executive vice president of business development for NextGen Healthcare, in a statement. “Providing consumer technology that encourages members to control and lead healthier lifestyles is a key factor in improving outcomes.”

Michael Paquin, vice president, business development for NextGen Healthcare, added “One of our users commented on the way that she was able to, for the first time, be able to share her medication lists easily with family, friends and all her physicians. It has saved this particular patient hours of time on a monthly basis.”

Technology-based solutions like the MediSafe Project and the NextGen Medicine Cabinet are among the latest patient-directed tools that improve medication adherence.

However, providers still play an important role in assisting patients in maintaining healthy behaviors like medication adherence. The American College of Preventive Medicine offers a SIMPLE approach on how providers can help their patients take their medications as prescribed.

Barriers to medication compliance abound, with memory issues, lack of support, and lack of education just being a few. What is behind these barriers? How can patient behaviors and motivations be changed?

MedicineCabinet2 (2)

Categories: Access to Care