By Val Jones. It is estimated that as many as 10 million U.S. adults have ADHD (Attention-Deficit/Hyperactivity Disorder).  A recent research study (publication-pending) suggests that the economic burden of ADHD on America could be as high as $250 billion annually. I attended a recent briefing on Capitol Hill and interviewed one of the study’s co-authors: Tufts economist, Dr. Peter Neumann as well as congressman (and psychologist) Tim Murphy about ADHD in America.

I learned from Dr. Neumann that cost these high cost estimates are most strongly influenced by reduced productivity in adult workers with ADHD rather than direct costs of treating children with the disorder. Productivity costs include absenteeism, and reduced work output due to difficulty focusing. Dr. Neumann explained that ADHD has many “spill over effects” in that it impacts the educational system, the justice system, the healthcare system, and our work environments. Please check out our interview video for the full story.

Congressman Tim Murphy is a clinical psychologist with three decades of experience in treating people with ADHD. He is also Co-chair of the Mental Health Caucus and GOP Doctors Caucus where he regularly works to raise awareness of healthcare accessibility needs. I had the chance to interview him also at the event.

I learned from Rep. Murphy that the costs of ADHD multiply when patients are untreated.  Getting the correct diagnosis is critical, because impulsivity and problems with focusing are not always caused by ADHD. These symptoms can be caused by lead poisoning, damage to the limbic system of the brain, metabolic disorders, or even sleep apnea. Children who are inattentive should not be put on medications for ADHD without first confirming the diagnosis by ruling out other possible causes.

Rep. Murphy recommends a team approach to the management and treatment of ADHD and he believes that costs related to ADHD are escalating because some physicians are not managing children holistically, but resorting to prescribing medications without involving counselors and family directly. He sees lack of health insurance coverage for behavioral health services as a threat to comprehensive and effective ADHD treatment.

Please watch the video for the full interview with congressman Murphy.

This post originally ran on the Better Health blog on December 14th.

By Magaly Blas. Can cell-phones be used to improve maternal health in Peru? The answer is Yes. Peru has one of the highest mortality rates in the Americas, 240 per 100,000 women die in childbirth. In Peru, 75% of homes have a cell-phone. Thus, the use of cell-phones to reach pregnant women with health messages seems a good strategy.

WawaRed (wawa means baby in Quechua language) is a pilot project of Cayetano Heredia Peruvian University that provides pregnant women with access to health information through a cell-phone-based interactive system. Women can access for free information about what to do if they have warning signs during their pregnancy such as vaginal bleeding or severe vomiting. The system also provides them with SMS reminders for their clinical appointments and with motivational messages.

The project will soon develop an electronic medical record that will interact with a mobile phone platform. Initially, the project was focused only on health information before the delivery. Given that women expressed their desire to continuing receiving messages to remind them about clinical appointments for their newborn, vaccinations, and nutritional tips, the project is being extended to cover one year after the delivery.

The project is being conducted under the leadership of Dr. García and Dr. Curioso and it is financed by the Mobile Citizen Program of the Science and Technology Division of the Inter-American Development Bank.

Wawared has established strategic alliances with the Regional Government, through the Callao Health Division, and with Telefónica Movistar of Peru. The project has now additional support from UNICEF to include an Electronic medical record for the baby`s first year of life.

Video of the project: WaWaRed: Getting connected for a better maternal and child health in Peru by IDB’s Mobile Citizen

The following is a guest post by Saundra Pelletier the CEO of WomanCare Global, a UK-based charity.  Saundra is an international marketing expert, published author, keynote speaker and executive coach.

By Saundra Pelletier. Big numbers always make people stop and think. Big birthdays, anniversaries or milestone are moments to reflect on what once was, and what could be.

Over the last few months, media coverage of the population reaching seven billion people has been especially ponderous, causing wonder about what the pressure of so many people will do to our planet. Questions abound. What will the carbon footprint of seven billion plus people be? Will there be enough food to feed everyone?  What can we do about population growth? How many people can the planet manage?

One of the ways we can help our planet is by investing in family planning. Family planning is one of the most cost-effective, high-yield interventions that exists today. Countries that invest in family planning can reap immediate health benefits, investment savings in health and education sectors, and social and environmental benefits that extend well beyond a single generation.

As I wrote in an earlier post, the ability for women here in the U.S. to use birth control to prevent or delay pregnancy gave every woman  the power to decide if and when she wanted to have children, and how many to have. And with the ability to keep families smaller, came the ability to provide for their present and future well-being. (more…)

By Val Jones. In a recent interview with the president of the American Optometric Association (AOA), Dr. Dori Carlson, I learned the surprising statistic that about 1 in 4 school age children have an undetected or undiagnosed vision problem. School vision screenings, while helpful, still miss more than 75% of these problems. And for those kids who are discovered to have a vision problem during a school screening, upwards of 40% receive no follow up after the diagnosis. Clearly, we need to do better at diagnosing and treating childhood visual deficits. My full conversation with Dr. Carlson can be listened to here.

Dr. Carlson told me that the solution involves comprehensive eye exams – a full medical eye exam performed by an eye doctor. During a comprehensive eye exam, the optometrist will check the health of the eye tissues, including the eye muscles, cornea, conjunctiva, tear ducts, pupils, lens, and retina, as well as the patient’s ability to track objects, to see at different distances, and to focus adequately.

Vision correction is important at the youngest age possible because learning is greatly impacted by vision. Children who can’t see the chalk board, or who can’t read a computer screen or book, may lag behind in school or have attention challenges. In fact, it’s likely that some visually impaired children are misdiagnosed with ADHD (Attention Deficit Hyperactivity Disorder) as their interest in lessons fade since they can’t participate well without seeing what’s going on. (more…)

By Archelle Georgiou. A report of child abuse is made every ten seconds and three million cases involving almost 5.5 million children are reported each year.   This tragedy occurs at every socioeconomic level, across ethnic and cultural lines, within all religions and at all levels of education.

This issue has never impacted me, my family or anyone close to me, but since childhood, I have been passionate about protecting children from abuse.  As early as age ten,  I was in Rock Creek Park (in Washington, DC) on a picnic with my family when I saw a mother whipping her young children with a tree branch.  I marched up to her and demanded that she stop.  As recently as a month ago, while patiently waiting for a table at IHOP,  I noticed a mom yanking so hard on her toddler’s arm that she was pulling her up from the floor.  “Um…excuse me,” I said calmly as I kept texting on my phone, “but if you keep doing that you might dislocate her shoulder.”  She stopped yanking then and angrily tried to defend herself.  I stayed within her striking striking distance and secretly hoped that she’d hit me so that I could call the police…and protect an innocent 2 year old.  (more…)

With summer break right around the corner, more kids unsupervised at home, and prescription drug abuse on the rise, the National Family Partnership’s Lock Your Meds campaign offers tips for parents.

Studies show that more teens start using drugs during the summer months – while unsupervised and with more free time.

• 70% of teens who abuse Rx drugs get them from family and friends.
• 68% of households do not properly secure their Rx medications.
• Studies show that unmonitored kids are four times more likely to engage in substance abuse.
• The distressed employment market makes it harder for teens to find summer jobs, leading to more boredom, restlessness and free time. 
• A new study surveyed 2,500 high schoolers and reported that one in four admitted to abusing Rx drugs.

TIPS FOR PARENTS:

• Safeguard all medicines by monitoring quantities and controlling access. Remove drugs from your medicine cabinet and lock them up.  
• Warn your youngsters that prescription drugs can be just as dangerous, addictive, and lethal as street drugs.  Studies show that teens dangerously view prescription drugs as “safer” to abuse than illicit drugs.
• Properly dispose of old or expired medicines in the trash. Hide or mix them with cat litter or coffee grounds before throwing them away.
• Don’t have kids at home? What about your grandchildren, nieces and nephews, and your friends’ kids that visit your house? (more…)

By Lois Privor-Dumm. We’ve all heard these words: “There is tremendous need here at home,” or “money in Africa has been wasted for so long.”   This is why this simple video from the ONE campaign struck me. Through a public health lens it is a no-brainer: of course you want to spend on cost–effective interventions that will save lives.  For others, while they admit that it is an admirable goal, the connection is not made.  In times of financial uncertainty, we have to be more careful with our money, don’t we?

One of the best and prudent ways to invest though, is in future generations.  In the US, we provide all of our children the best chance at life, with fewer worries about preventable, devastating disease.  Imagine what that kind of security could do for a family in Africa.  Healthier children in Africa would be able to stay in school.  Families would worry less about the all too common diseases of pneumonia and diarrhea, and their devastating costs.  Rather than accepting the fate that their children may fall ill, they would be thankful that new vaccines are being made available.  Throughout the years, as healthcare improves because of our investment, so would income and productivity. Our investment would return to us through a country’s improved stability, better governance, and more – and all directly relate to our own security. 

The introduction of a new vaccine is not something taken for granted in the developing world.  Up-to-date immunization cards of young children are among a family’s prize possessions.  Throughout Africa, pneumococcal vaccines, once deemed far from the reality of any African village are now being introduced and are offering hope.  Rotavirus vaccines, helping prevent one of the most deadly forms of diarrhea in young children, may soon also be a reality across Africa -  all for a relatively small fraction of the US budget.  How often do we have a chance to save so many lives with such an effective and minimal financial commitment?  Four million lives over a five-year period is a pretty good return on investment!

Let’s make wise investments

Next month, the GAVI Alliance will be holding their pledging conference to encourage donor countries like ours to contribute to providing the most basic and effective prevention.  Please tell President Obama and your local leaders that you care.  Sign the ONE petition, and tell your friends and family to do so. The more they hear from you, the more they know this is an investment we as Americans care about.  Do it for their future – and ours.

Photo credit: Adrian Brooks, Imagewis

The following is a guest post by Jenni Sunde. Jenni is a freelance fashion writer and pop culture junkie. She specializes in all things lifestyle-related. From home and design to health and beauty. With her love of art and all things beautiful, she delights in sharing her sense of style from her life to your computer monitor. Her title pegs her as an editor at a website that specializes in providing people with car insurance quotes, but her passion leads her into writing with a little more substance and a lot more heart.

By Jenni Sunde. The benefits of a sound mind and body can be traced all the way back to ancient Greco-Roman cultures.  Despite how long the concepts behind mind and body connection have been around, they are frequently overlooked in our modern society.  The connection between mind and body is particularly impactful for adolescents; studies have shown that happier youths are indeed, healthier youths.

Emily Shaffer Hudkins and her team of researchers at the University of South Florida conducted a study that focused on the impact that positive emotions, moods and overall satisfaction with life has on the health of teens.  Her research shows that these positive feelings, also known as subjective well-being are more significant than depression and anxiety when it comes to physical health.  Psychopathology has long been where the emphasis is placed when it comes to determining how the mind and body are connected. 

Hudkins conducted an experiment with 401 students, grades 6-8 from a suburban southeastern middle school in the US.  She monitored both their subjective well-being and psychopathological tendencies.  The study asked questions about the teens’ satisfaction with life; whether they were strong, proud and excited, and whether they felt lonely, guilty, or sad.  What Hudkins founds is that good mental health most often is linked to good physical health.  Mental health indicators explain roughly 30 percent of the difference in physical health ratings.  The findings show that subjective well-being has a significant, unique and primary affect on predicting important physical health outcomes in youth.  In other words, subjective well-being is more strongly associated with physical functioning than psychopathology.

What Emily proposes is that we change our wellness models to ones that are more holistic, so as to incorporate the entire spectrum.  With current standards, the subjective well-being is often overlooked in terms of its impact on physical health when it actually is more prominent than poor mental health in terms of how much it can affect the body.

In the recent CNN article “Parents, don’t dress your girls like tramps” author LZ Granderson discusses what for some might be an uncomfortable topic. Some of the main points in his article are:

• Some parents dress their young girls in provocative outfits
• Retailers have encouraged this behavior by marketing inappropriate clothing
• It’s OK to blame retailers, but it’s parents who are ultimately responsible
• Children need parents who will set rules, not be their friends

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The following was originally posted on James’s Project by Mary Ellen Mannix, MRPE. The mission of James’s Project is to find, support, and help work that protects infants in their first year of life. James’s Project aims to reduce infant mortality by focusing on patient safety isssues that affect the start of life. Our tools are education, communication, and collaboration.

Rainy days and Saturdays get me down. (Sounds like a good song lyric.) Rainy days force a quiet among the constant buzz of activity. Saturdays are the closest thing to a once a week siesta. Nearly ten years ago, on a Saturday morning I had to to reflect on the beliefs I had held dear all my life as I was holding my newborn son who had just died. It took more than five years before I could wake up on a Saturday without feeling a desire to go back to sleep.

Today the rains came and brought with them memories of a Saturday past. Tears and frustration and disappointment rallied. Those feelings don’t make me feel very peaceful. Taking the analytical approach learned in grad school, I identified five causes for a peace builder in health care to have anger, frustration and the occasional tears.

Poor communication. This is a well-documented root cause for most every medical error. Earlier this week Kathleen Sebelius of the Dept of Health and Human Services and Don Berwick, MD of the Centers for Medicaid and Medicare announced the creation of a $500 billion initiative to encourage more collaboration between hospitals, health care providers, community organizations, and employers, etc to improve care and lower costs. James’s Project was among the first ten organizations to make the public pledge for the Partnership for Patients: Better Care, Lower Costs in the greater Philadelphia area. Through this website consumer and clinical organizations can seek out others with similar values for collaboration. When a cancer patient called me this week sharing she had left the hospital without discharge instructions together we took a look at this website. The large teaching hospital had not yet pledged. By the end of the week, the institution had taken the pledge but the patient is still waiting for her discharge instructions. This is new resource where patients can grab the wheels and drive change by asking their hospital, health care system, insurer and or doctor if they have signed the pledge. Also ask – what community or patients group are you collaborating with?

Gag Clauses. As a rule, people love to hate the plaintiff in a medmal case. If you actually disagree with me, think of before you knew a loved one who died from medical errors. Americans love to love the whitecoats. Anyone associated with a trial lawyer automatically becomes a blackhat.
I believe in the judicial system our forefathers created. Everything breaks down at times. As a teacher, I hope that learning happens from mistakes. With James’s case, it was clear the physicians had as much of a right to a fair trial as my son did. It could have all been spared if open communication between us had been allowed. I was offered $750K to not go to trial and to not speak of my son’s whole life. All I wanted was to cover my attorney’s fees (about 45K at that point) and a 5 minute conversation with one of the defendants. It was not an acceptable counter offer evidently.
I can reflect now that I did get that conversation (and much more than 5 minutes) with two doctors (not just the one) and I did that all on my own.
Despite the tremendous pain of our shared trauma we have been able to heal by restoring a relationship. Our story and how we did it is how money in health care conflicts can be saved. More importantly, it teaches so many what not to do when they may find themselves in a similarly shared event. I have spent years and dollars investing in formal education to share this. (more…)

By Hope Ditto. It’s the morning after the Academy Awards, barely twelve hours after the last little golden Oscar statue was presented, and your eyes are still burning with images of what our society conventionally considers “beauty” . The Oscars are essentially a parade of broadly accepted beautiful people with beautiful hair and beautiful figures in beautiful clothing adorned with beautiful accessories and beautiful shoes. Between last night’s red carpet glam-fest, that certain day of the year devoted solely to love and beauty two weeks ago and the annual release of the Sports Illustrated swimsuit issue last week, you’re probably feeling like February’s dished out all the beauty you can handle in a measly 28 days. In reality, it isn’t beauty you’re fed up with — rather it’s the media’s perception of what should constitute beauty that has got you so fed up. So if you’re at your wit’s end with the notion that a toned bikini bod and/or a pair of really expensive shoes are the be all and end all when it comes to appearances, keep reading, because our February Man of the Month – photographer Rick Guidotti – has devoted his career to capturing beauty of a different sort. And we could find no better way to celebrate our favorite February holiday (my apologies to GW and Abe) – Rare Disease Day – than by honoring Rick’s work.

Rick Guidotti

Rick Guidotti began his career focusing, like most fashion and portraiture photographers, on capturing traditional beauty. Educated at New York’s School of Visual Arts and based in Manhattan, Guidotti enjoyed the glamorous life of a successful high fashion photographer – snapping shots of conventional beauties for clients like Yves Saint Laurent, Elle and Harper’s Bazaar in traditionally beautiful places like Milan, Paris and London.

But all of that changed in 1997, when Guidotti was drawn to focus his work on a different type of beauty – the “beauty of genetic diversity.” Seeking to gain attention for this beauty he had discovered, Guidotti joined forces with Diane McLean, MD, PhD, MPH and together, the pair founded Positive Exposure (PE) – “a nonprofit organization that challenges stigma associated with difference by pioneering a new vision of the beauty and richness of genetic diversity.” The organization “utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights” by forging “cross-sector partnerships with health advocacy organizations, governmental agencies and educational institutions.” 

PE does not just display Rick’s photos, though. They sponsor a number of initiatives and programs aimed at concurrently capturing the beauty of those suffering from genetic conditions and educating the broader public about them.

Still, they’re known best for their flagship undertaking – the Spirit of Difference gallery, which is a collection of images and video interviews of people, particularly children, living with various genetic conditions. PE has an online version of the Spirit of Difference gallery that you can check out here.

That’s not all PE does to impact and improve the lives of those living with these conditions, though. The organization sponsors and puts on “Self-Esteem/Self-Advocacy photographic and interview workshops” and “diversity workshops” and conducts “portable, sustainable educational and human rights programs and multi media exhibitions for physicians, nurses, genetic counselors, health care professionals-in-training, universities, elementary and secondary schools, legislators and the general public” around the country and the world. Using the photos and video interviews that Rick has taken, presenters (oftentimes Rick himself) shed light on not only the beauty but the unique spirit of his subjects, helping people to look past the differences created by their conditions and see that special, indescribable quality that so captivated Rick some 14 years ago.

But don’t just take my word for it. Check out one of Rick’s presentations, entitled “Redefining Beauty”.  I know I can’t think of a better way to celebrate the holiday than by checking it out! And, for more information about Positive Exposure and its undertakings, you can visit their website.

By Lois Privor-Dumm. A decade can make a difference.  Eleven years ago this month, I had the privilege of launching pneumococcal conjugate vaccine (PCV) here in the US.  It was a vaccine that I knew would have a profound impact on children and families all over the country, Protection against severe meningitis and other infections allowed American children to move along the path of their lives –with a low risk of this potentially life-changing catastrophic disease.

Children in developing countries though faced a different picture over the past decade. Pneumococcus in the developing world not only causes severe meningitis, but is a leading cause of pneumonia.  Without access to PCV, 3 month-old Dominic Mwangi, found himself in the district hospital undergoing antibiotic treatment for life-threatening pneumonia.  His mother was away from home and family for 3 days.  Dominic was lucky and recovered; An astonishing 1.5 million children, mainly in Africa and Asia, are not so lucky.  Almost half of all severe pneumonias and meningitis deaths are thought to be caused by bacteria that can be prevented by the use of vaccine. Much more disease could be prevented with better nutrition and access to care.   Dominic, because he was born in Kenya, was 112 times more likely to die of pneumonia than an American child.  In Afghanistan, that number is 400. 

2011 paints a more promising picture.   A new generation of vaccines from Pfizer and GSK providing the broader protection needed to fight pneumonia and meningitis in developing countries has been made available in Nicaragua, Yemen and now Kenya within a year of launching in the industrialized world.  By 2015 more than 40 countries will do the same. 

What changed?  It was a convergence of factors – pharmaceutical companies, seeing a greater likelihood of demand with secured financing, were willing to offer low prices to those most in need, supplying at prices of less than 90% of those in industrialized countries.  Low-income countries wanted the vaccine because they saw the potential impact and a plan again for financing.  Financing was needed – and eventually made possible by Italy, UK, Canada, Russia, Norway and the Bill and Melinda Gates Foundation who donated $1.5B to the Pneumococcal AMC, an innovative financing mechanism and the GAVI Alliance who is making up the price differentials that low-income countries cannot manage as yet.   

It took a lot of effort to see these pieces fall into place, but one that can’t stop with just this example.   In a time where all of us are paying attention to how to do more with less, efforts like this one provide an important lesson of what is possible. Investing in health, individual countries have made dramatic economic progress and this will help all of us.  Take a look at this Hans Rosling video and you’ll see why investments in health are, well, a good investment.   Children of all nations deserve a solid foundation to become healthy adults. We have more to do, we need to keep going.

By Glenna Crooks. Sorry, this blog is not about sexy new vaccines – you know, ones that will prevent smoking, cure all cancers, stop obesity or eliminate wrinkles. This is about more ‘here and now’ matters. It addresses vaccines, vaccinators and non-vaccinators, contains a proposal for moving forward on immunizations and some folks – including my friends – are not going to like it. But then, they don’t call this a ‘disruptive’ site for nothin’.

It comes from my attendance at a CME course on vaccines held by Philly’s Children’s Hospital last weekend. I was privileged to hear great presentations and meet fantasic folks. Despite my work in vaccines over several decades in both government and industry, some information was ‘new’ for me, crystallizing issues and controversies in vaccines.   

 Here’s the good news:

Pediatric vaccines continue to prevent suffering, save lives and money. CDC studies show 14 million cases of disease prevented, 33,000 deaths, $9.9 Billion in direct medical costs and $43.4 Billion in savings to society. New vaccines have been added to the schedule. Is that cool or what? When I was in government, companies were leaving vaccines in droves. They’re coming back. Good news.

Rates of underinsurance for children’s vaccines have not increased, despite the new numbers of vaccines (and therefore additional cost for fully immunizing a child). Insurance and Vaccines for Children (VFC) funding is covering kids pretty well.

Pediatricians and their nurses remain unsung heroes, not getting nearly enough credit for the complexity they manage in the number of vaccines and the cost of the inventories they carry, despite the reality that they’re not adequately compensated. They could have long ago abdicated this aspect of a child’s good health. They haven’t. That’s very good news.

Kids aren’t traumatized by having many vaccines administered at once. In fact, research has demonstrated that only the first shot creates the ‘cortisol-raising’ indication of a stress reaction, subsequent shots (sometimes 3-4 others) administered at the same time, don’t.

We’re actually putting fewer antigens into kids today than at any time in history, even though we give many more vaccines! Wow, who knew?! In 1900, the smallpox vaccine had 198 antigens. In 1960, with DTP and polio added, that totaled 3,200 antigens. Today, it’s only 166-169 antigens, in part because we’ve eradicated smallpox and in part because vaccines have been improved. 

Kids – even babies – can handle those vaccines immunologically. Humans develop the capacity to respond to foreign antigens at 14 weeks gestation. There are few foreign antigens present in utero, but babies’ immune systems are challenged right from the moment of birth and have enormous immunologic capacity. And, right from the moment of birth babies can be exposed to the diseases that vaccines prevent. They’re at risk and we need to protect them, when they can be immunized they need to be and when they can’t herd immunity is needed to protect them. (more…)

Every three seconds, a child somewhere in the world dies due to the lack of basic health care. Of those children under the age of five, almost two-thirds could be saved with simple low-cost health interventions, if only they had access to basic health care.

Save the Children is addressing this with their “See where the good goes” campaign. Launched in partnership with the Ad Council, the Good Goes campaign aims to mobilize citizen action in the U.S. to help local health workers save more children worldwide by using social media strategies to raise awareness about the importance of local health workers in developing countries.

Every four seconds, a child survives thanks to the basic health care provided by local health workers – such as the ones Save the Children helps train and supply in villages around the world. Frontline local health workers can help children survive threats like newborn complications, pneumonia, diarrhea, malaria and malnutrition every day. Global estimates suggest that we need more than four million more local health care workers in order to save the children – the education and supplies for which quickly add up.

To highlight both the need and benefits of local health workers, the Good Goes campaign provides participants with a chance to actually “See where the good goes” – to see exactly what Save the Children funds provide – as a means of encouraging donations. Save the Children and the Ad Council show  rather than tell website visitors how their donations will improve the condition and quality of life of millions of children, weaving together various social media platforms to paint a more comprehensive picture of how funding improves the living conditions and daily lives of children at all corners of the globe.

The campaign’s website serves as a portal ready to transport visitors to remote corners of the world and allow them to experience firsthand the horrors and hardships of daily life. Personal blogs from local health care workers not only contextualize the experience, but add a visual element as well. The Great Wall of Good Facebook app  demonstrates how many have already pledged their support, and how many more it will take in order to save the children. The Action Center offers additional ways to get involved and make a difference beyond monetary donations. Each different social media platform provides a different viewpoint, a different insight and a different way to get involved. Put them all together and you get a very different kind of awareness/advocacy campaign.

By Santi Bhagat. We all know how hard it is to advocate for ourselves, our spouses and our parents.  But can you imagine having to advocate for your child day in and day out for the rest of your life?  This is the harsh reality faced by many parents of children with childhood-onset health conditions and disabilities.  And believe me, it is hard!  When my perfectly healthy child became critically ill at the age of 8 years, I went from being a medical fellow to a life-long, full-time parent advocate. 

I learned everything I didn’t want to know about the health care system, but I eventually realized that the knowledge I acquired as an advocate is equally critical to health care practitioners if they are to provide quality health care, i.e., the right care the right way at the right time.  Adding the dimension of patient-centered care means care is delivered the way patients need and want it. 

Right now, we are still learning how to advocate for the right care the right way at the right time.  It looks like we’ll have to wait a while to get care the way we need and want it.   

As a parent and a physician, I had to be extra careful in the pediatric health care world.  If I came across as too demanding, I would have been dismissed as a neurotic or helicopter parent.  (I know a couple of physician-parents who were erroneously said to have Munchausen’s Syndrome by proxy.)  If I didn’t advocate, I risked danger.  In every situation, I had to find the fine line between objectivity and subjectivity, to assure myself that I truly was balanced in my approach. 

The problem is that even though most of us know what to advocate for, we are still dealing with human beings in the health care system.  They have pressures and barriers, they have egos, they have feelings – and they have the knowledge.  The art of advocacy is getting health care providers to do the following:

• Provide the best care so the patient achieves and maintains optimal health, and
• Empower patients with the knowledge needed to make informed decisions and self-manage their health and health care. 

The art of advocacy should empower health care providers to practice the art of medicine.

Parent advocates have another equally complex system to tackle: the education system.  After learning about all the various laws, e.g., American with Disabilities Act, Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act, parents have to learn about the culture of their child’s school as well as the county and state educational systems.  Then, parents have to advocate with human beings in the educational system to practice the art of education.

When our children grow up and enter adulthood, all the rules change and we are back at square one again.  The only consistency is that the systems are devoid of supports, and as parents, it is up to us to start over and learn from scratch on how to advocate for young adults with childhood-onset conditions and disabilities.