Hospital Outreach Program, New Website and Video Advance Mission of The Hole in the Wall Gang Camp

The Hole in the Wall Gang Camp in Ashford, Connecticut began in 1988 as a way for seriously ill children, including those with cancer, to “raise a little hell,” as founder Paul Newman described it – a time and place when kids could simply be kids, without being self-conscious about their ongoing medical needs.  Twenty-seven years later, it is much more than a summer camp, offering a robust range of programs year round, in Connecticut and beyond. To tell that story, and increase public awareness of the array of programs available to children with acute medical needs, the Camp has launched a newly redesigned website (www.holeinthewallgangcamp.org) that eases navigation through the various program offerings, and produced a new video that highlights the range of activities and impact.

Among the programs highlighted is the less widely known Hospital Outreach Program (HOP), one of a number of programs that have blossomed in recent years to extend the mission and impact of The Hole in the Wall Gang Camp into communities to reach more children.

Through one-on-one interactions and group activities, HOP “brings Camp’s unique summer programming and spirit to hospitals and clinics. Whether working bedside, in playrooms or outpatient clinic settings, our interactions and activities with children and families include arts & crafts projects, and interactive games specifically adapted for use in the medical setting, as well as other Camp-inspired programming and events. Just like at Camp, all interactions are guided by the child’s choice and are child-driven,” the website explains.

Responding to the fact that children in the hospital often feel isolated, fearful, stressed, and uncertain because of their illnesses, the Hospital Outreach Program “brings the hopeful, playful spirit of The Hole in the Wall Gang Camp to children, families, and their caregivers in the hospital setting, at no cost, year-round on a weekly basis.”

The HOP program has expanded to 35 medical facilities in Connecticut, Massachusetts, New York, New Jersey and Pennsylvania.  The Connecticut programs are offered at Connecticut Children’s Medical Center in Hartford, Yale-New Haven Hospital, Yale Pediatric Hematology and Oncology Clinic in Trumbull, and the Yale-New Haven Hospital’s Bridgeport Campus.

The HOP Specialists that provide one-on-one sessions visits “have a bachelor’s degree, excellent kid skills, experience developing fun and exciting programming and knowledge of hospitals systems. They attend both a HOP and Hospital Orientation and receive regular opportunities for professional development,” the website points out.

At Children’s Hospital of Philadelphia (CHOP) last fall, the facility was “transformed into Downtown Camp” for a week, as nearly 30 Camp staff and volunteers and more than 60 CHOP volunteers provided five full days of Camp programming. In all, there were “approximately 800 healing experiences with children and families throughout the week, bringing the safety, respect and love of Camp to many families” in Philadelphia.

Building on the success of the week, the Hospital Outreach teach is looking ahead to similar events across the network of partner hospitals.

Among the other programs offered during the year, in addition to the centerpiece Camp experience, are CampOut, which brings the Camp experience to campers in their own hometowns, weekend programs in Ashford in fall and spring, and Hero’s Journey for campers who have aged out of the summer program.  In addition, programs are offered for parents, caregivers and siblings of children participating in The Hole in the Wall Gang Camp.

http://youtu.be/P2516LEl6AM

CT Organization Leads Efforts to Increase Awareness of Rare Disesases

Rare Disease Day, observed on February 28, is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community. According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people.  Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.  Many rare diseases are chronic and life-threatening.

The National Organization for Rare Disorders (NORD), with national headquarters in Danbury and offices in Washington D.C. and Massachusetts, is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.

In Connecticut this year, the Morgan Leary Vaughan Fund, Inc. (Morgan’s Fund), an all-volunteer public charity dedicated to Necrotizing Enterocolitis (NEC), will be holding a public awareness event on February 28 in Stratford. The organization’s inaugural event, Illumin8ing Rare, is designed to provide “a moment of reflection and appreciation for all those who have been directly affected by a rare disease,” organizers say, adding “it is an opportunity to celebrate survivors and to share tributes to those who are no longer with us.”

Morgan’s Fund mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength. Morgan and his twin brother were born at 28 weeks, nearly three months early and each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20 percent of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. The fund is his family’s way of paying it forward.

NEC is an inflammatory disease that leads to necrosis (death) of the intestine. It is predominately due to prematurity and its statistics are startling. NEC is the second leading cause of death in premature infants. NEC is the 10th leading cause of infant death overall. NEC is a rare disease — occurring in approximately 25,000 babies per year in the United States. Despite extensive study, the cause of NEC is uncertain.

Earler this week, the UConn School of Medicine Disabilities Interest Group hosted a Rare Diseases Awareness Event on February 25th at the University of Connecticut Health Center, celebrating individuals who have rare diseases and the many researchers and physicians who are fighting to find cures for these conditions.

To raise awareness nationwide this year, NORD is coordinating a new social media campaign, #1in10, to highlight the 1 in 10 Americans living with a rare disease.  “It’s astounding that there are just as many Americans living with a rare disease as there are people who are left-handed,” said Lisa Phelps, director of marketing and community relations at NORD. “We are launching this campaign to help raise important awareness for this major public health issue and the need for safe, new treatments.”

To help support the #1in10 campaign, NORD has launched the Instagram account, @rarediseasedayUS.  Instagrammers are invited to tag @rarediseasedayUS in their photos and celebrations to share what’s happening now for Rare Disease Day.  Instragram members are invited to use the official Rare Disease Day hashtags #RDD2015 and #RareDiseaseDay and follow Rare Disease Day on Facebook (/RareDiseaseDay.US) and Twitter (@RareDayUS).

For more information about Rare Disease Day, go to www.rarediseaseday.us. or visit NORD’s website, www.rarediseases.org.

http://youtu.be/DpIt8vH6xC8

State Report Calls for Tax Incentives, Better Insurance, Greater Flexibility to Improve Care for Rapidly Growing Older Population

A new report by the state legislature’s Commission on Aging, examining state funding and support for home and community-based care for older adults and individuals with Alzheimer’s Disease, has issued more than a dozen recommendations, including establishment of a Dependent Care Tax Credit, release of funds to support home modifications, and extension of paid sick leave to cover care of elderly relatives.  Incentives for employers to offer long-term care insurance coverage are also suggested. The Commission on Aging is a nonpartisan public policy and research office of the Connecticut General Assembly.  A law passed by the legislature last year charged the Commission with studying private sources of funding available to elderly persons and persons with Alzheimer's disease in need of home or community-based care, including the cost effectiveness of such programs funded by the state with recommendations on which state programs should be expanded.

Connecticut is the 7th oldest state in the nation.  Over 70,000 people age 65 and older live with Alzheimer’s Disease or another dementia, and disabilities affect 10.4 percent of all Connecticut residents – nearly 400,000 people. Due to factors including aging demographics and consumer choice, demand for home-care based services is expected to “increase exponentially in coming decades,” according to the report. Between 2010 and 2040, Connecticut’s population of people age 65 and older is projected to grow by 57 percent, with less than 2 percent growth for people age 20 to 64 during the same period.

The 23-page report noted that “informal caregivers are the backbone of the long-term service and support system. It is estimated that the economic value of the care provided by unpaid caregivers is $5.8 billion in Connecticut. Supporting caregivers is a cost effective means of reducing the reliance on costly formal care system.”  The report went on to caution that “without support, caregivers are likely to become emotionally and physically ‘burnt-out’ and find few options” short of turning to institutional care.

The report recommends amending the state tax code to include a Dependent Care Credit where the tax filer can receive a credit for care expenses incurred while a caregiver is working. Home care and adult day care costs are cited as examples of work‐related expenses that may be eligible.

To provide further support to informal caregivers, the report calls on the legislature to extend paid sick leave for those caring for an aging parent or other relative.  Connecticut’s law currently allows paid sick leave to be used for a worker’s own illness or injury, or to care for the worker’s child or spouse.  It does not extend to cover workers who care for a parent or other relative. 

Policies that “allow for flexibility” in work schedules are also urged, cited studies have shown such schedules not only are “an import way to support a caregiver but also… positively affect recruitment and retention efforts.”

The report urges the authorization of $6 million in bond money for home modifications and adaptive technology, which was allocated by last year’s legislature, and development of a list of “vetted home repair and home modification contractors and programs” to improve the likelihood that individuals would be able to “age in place.”

The goal, the report indicated, would be to “enable them to function with greater independence in the home, remain in the community and reduce the need for human assistance. Simple modifications include adding nonslip strips to bathroom floors or other smooth surfaces, improving lighting, providing telephones with large numbers and letters, and installing grab bars. More complex (and expensive) modifications include installing ramps, chair lifts, stair glides, widened doorways, roll-in showers, and lowered countertops.”

Among the other recommendations, the report urges professional development for those whose job it is to care for individuals with Alzheimer’s and dementia, to align with changing demographics in the state’s population.

The report also suggests that policy makers “explore the possibility of incenting employer-based long-term care insurance coverage.”  In 2009 almost 25,000 employers in the U.S. offered long-term care insurance to their employees – just 35 percent of the 7.5 million insurance policies in effect.  In addition, the report encourages the Connecticut Congressional delegation to support a federal tax deduction for long-term care insurance, and urges policy makers to consider making reverse mortgages “a more viable option.”

Additionally, the report also considers advances in technology in the care of older residents.  It describes “telehealth” as a mode of delivering health care, public health and certain non-clinical services using electronic communications technology, stating that it “represents an opportunity for Connecticut to improve access to care, coordination, quality and outcomes for individuals, all while reducing cost, promoting local economic health, and offering a patient-centered approach.”  The Commission on Aging calls on Connecticut to join at least 21 other states that have telehealth parity laws for private insurance, meaning that providers can collect reimbursement for telehealth services.

The report, “Study of Funding and Support for Home and Community-Based Care for Older Adults and Persons with Alzheimer's Disease,” also recommends that the state “address service challenges specific to housing, transportation and behavioral health,” including conducting “walkability audits” to assess sidewalks, crosswalks, and pedestrian access to essential services.  It also suggests that the state “explore the use of taxi vouchers, public and private paratransit services, paid and volunteer driver services, on-demand car rental services and other forms of transportation in the growing “shared mobility” economy.

Racial, Ethnic Disparities Common in CT Hospital Readmissions, Study Finds

An Hispanic patient hospitalized in Connecticut for heart failure is 30 percent more likely than a White patient to end up back in the hospital within a month, according to a study published in Connecticut Medicine, the journal of the Connecticut State Medical Society.  The study also found that a Black patient hospitalized for chest pain is 20 percent more likely to be readmitted within 30 days after discharge. The study was based on an analysis of the Connecticut Hospital Inpatient Discharge Database -admissions to Connecticut hospitals from 2008-2012. The findings, the study noted, “should serve as a catalyst for further investigation of the interplay between patient characteristics, hospital practices, community-based resources, and insurance coverage” in fostering “racial and ethnic disparities in health and healthcare.”

The multi-year study discovered significant and pronounced disparities in readmission rates for Black and Latino patients compared to White patients in 9 of 10 major diagnostic categories.

The Connecticut State Medical Society hosted a well-attended symposium last week highlighting its multi-year research into racial and ethnic disparities in readmissions.  The symposium, funded by the Connecticut Health Foundation, brought together physicians, nurses, patients, and other stakeholders from across the state. The stakeholders had an opportunity to review and discuss the CSMS research data, and also provided insight and interpretations of the disparities. The feedback will be integrated into clinical recommendations for care delivery models that may help to reduce the level of disparity in hospital readmission rates.

The symposium was designed to provide an opportunity to take a fresh look at these readmission disparities and determine more effective ways to address them. Stakeholders included physicians and other licensed health care providers; social service providers; healthcare/social service administrators, leaders, and managers; lawmakers and policy analysts; patients and their family members; healthcare consumers and patient advocates.  It focused on documenting potential best practices of the four conditions with the greatest racial and ethnic disparities in readmission rates, as determined in the study:  Uncomplicated Delivery, Joint Replacement Surgery, Heart Failure & Chest Pain, and Digestive Disorders.

The study also noted that “barriers to accessing community based care among Connecticut Medicaid beneficiaries are well-documented, often leaving such patients with few options other than hospital care for both urgent and non-urgent conditions.”

The study’s authors noted that “this study adds to a growing body of evidence on disparities in hospital readmissions in several important respects.”  First and foremost, they point out, “racial and ethnic disparities observed in this study were considerably more pronounced than disparities generally reported in previous studies.”

“We’re seeing large disparities in readmissions for a number of conditions,” Robert Aseltine, the study’s lead author and professor of behavioral science and community health at the University of Connecticut Health Center, told the Connecticut Health Investigative Team (C-HIT). “There’s no one factor that jumps out. There’s no simple answer. ” Co-existing health conditions and socioeconomic status, for example, “don’t explain everything away.”

In March 2014, a report by Mathematica Policy Research for the Robert Wood Johnson Foundation indicated that the U.S. Department of Health and Human Services observed a year earlier that “while overall quality is improving, access is worse and there has been no improvement in lessening disparities.” The report goes on to point out that there “appears to be a shift from the concept of disparities to one of equity. The shift provides more focus on action and social justice relevant to a wide variety of subpopulations.”

In 2010, when “nearly half of U. S. physicians identify language or cultural communication barriers as obstacles to providing high-quality care,” physician adoption of practices to overcome such barriers was described as “modest and uneven, according to a national study by the Center for Studying Health System Change (HSC).

The new Connecticut study was conducted by Robert H. Aseltine, Jr, PhD, Jun Yan, PhD, Claudia B. Gruss, MD, Catherine Wagner, EdD, and Matthew Katz, MS.

CT Ranks #4 in Planned Parenthood Locations Per Capita; 17 Sites in State

Connecticut ranks #4 in the nation in the number of Planned Parenthood locations per capita, according to a state-by-state analysis. Connecticut, with a total of 17 locations in the state, ranks behind only Vermont, Alaska and Montana in the number of clinics per 100,000 women ages 15-50.  According to the analysis by Bloomberg.com, Connecticut’s estimated population of 856,016 women ages 15-50, or a ratio of 1.99 locations per 100,000 women.  Rounding out the top 10 are Iowa, Washington, Colorado, Wisconsin, New Hampshire, and Indiana.

The 17 locations in Connecticut are in Bridgeport, Danbury, Danielson, Enfield, Hartford, Manchester, Meriden, New Britain, New Haven, New London, Norwich, Old Saybrook, Stamford, Torrington, Waterbury, West Hartford and Willimantic.

The mission of Planned Parenthood is to “protect the fundamental right of all individuals to manage their own fertility and sexual health, and to ensure access to the services, education and information to realize that right,” the organization’s website points out.

Among the states with the fewest number of Planned Parenthood locations, and the lowest number per capita, are North Dakota (0 locations), Mississippi (1 location), and Alabama, South Carolina, Louisiana, and Kentucky, each with 2 locations in the state.

California has the most locations, with 115, followed by New York with 59, Texas with 39, Pennsylvania with 38, Washington with 33 and New Jersey and Ohio with 28.  Connecticut ranks fifteenth in the number of Planned Parenthood locations in the state.

Planned Parenthood’s website describes the organization as “your trusted source for STD/STI testing, birth control, pregnancy tests and counseling, emergency contraception and more - all in a convenient, confidential and safe environment.”  The site notes that the organization offers “a sliding fee scale based on your income” and participates with many insurance plans.

Last month, as part of Cervical Health Awareness Month, Planned Parenthood of Southern New England (PPSNE) urged women to “start the year off right by taking charge of their health with important preventive screenings, such as a Pap test, which can detect irregularities that lead to cervical cancer.”

The Centers for Disease Control and Prevention (CDC) recently released new data showing that while cervical cancer screenings have been proven to save lives, about eight million women ages 21 to 65 have not been screened for cervical cancer in the past five years. More than 12,000 women in the U.S. are diagnosed with cervical cancer each year, and more than half of these cases are in women who have never been screened or in those who haven’t been screened in the past five years, according to Planned Parenthood.

The analysis ranking the states for Planned Parenthood locations uses data from the U.S. Census and Planned Parenthood, as of December 31, 2014.

Northern New England States Anticipate Higher Lyme Disease Levels for 2014

Officials in Northern New England are anticipating record or near-record levels of Lyme Disease in their states during 2014 when the final numbers are tallied. Maine Center for Disease Control and Prevention Director Sheila Pinette recently told the Associated Press that when the 2014 stats are in, the state is likely to exceed the record high of 1,384 cases of the illness in 2013.  Vermont officials say their state is on track for its second- or third-highest total on record in 2014, following the 2013 high of 671, and New Hampshire officials say the numbers there are in line with recent years, which included a record-high in 2013.  Official data will be released in the coming months.

Connecticut’s 2014 stats are due in March, and officials did not comment on what they are anticipating.  In 2013, Connecticut had 2,108 confirmed cases, according to the Department of Public Health, and a total of 2,918 confirmed or probable cases of Lyme disease were reported.   The largest number were in Fairfield County, New London County and New Haven County.

It is unclear whether better reporting methods or environmental factors – or both – are behind the apparent growing numbers in New England. Symptoms can include fatigue, fever, skin rashes, and a headache. Left untreated, it can lead to arthritis, facial palsy, and problems with the nervous system.  

Last summer, the Centers for Disease Control and Prevention reported that an estimated 300,000 Americans get the tick-borne disease every year, PBS reported. The number of cases has been increasing.

Most instances of Lyme Disease are concentrated in the Northeast, with 95 percent of them in 14 states, including Connecticut, along with Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia and Wisconsin.

In 2013, it was the 5th most common Nationally Notifiable disease, according to the CDC. Last year, the Pennsylvania legislature established a task force that will operate within the Pennsylvania Department of Health to help the department develop better surveillance, educate the public about Lyme disease, and advise health care professionals.

The 2,918 cases in Connecticut in 2013 reflected an increase from 2,660 in 2012, but a drop from 3,041 cases in 2011 and 3,068 in 2010.

Flu Increasing in Connecticut, As Official Data and Marketing Ads Differ on Severity

Sometimes, the numbers just don’t add up.  How can a city with a population of 125,000 have 156,598 incidences of the flu reported – in just one week?  That question was posed, in a letter to the editor published in the Hartford Courant, by H. Wayne Carver, Connecticut’s former Chief Medical Examiner. Carver noticed a full page ad in the newspaper which ran on Christmas Day, asserting the number of flu incidences “reported in Hartford.”  That ad ran again on New Year’s Day and Sunday, January 4, promoting Puff’s tissues, and offering a 25 cent coupon to "soften the blow.”  Puffs is a product of Procter & Gamble.

A visit to the Puffs website reveals a national interactive map which can provide the incidence flu merely by typing in the name of a town or zip code.  The result for Hartford? “Current cold and flu levels in HARTFORD are MILD.  Mild means that 3% to 8% of the population is sick.”  One does not need to be a math major to determine that 8 percent of 125,000 is not 156,598. And for a city of 125,000, how can this statement, on the Puffs facebook page, be accurate:  "FYI, Hartford. 156,598* of you have the flu."

So, where did the numbers come from?  The small print in the ad cites ”FAN Data, IMS Health, Affected Population in Hartford for Week Ending Saturday, December 6, 2014.”

IMS Health is a Danbury-based global company that provides information, services and technology for the healthcare industry.  IMS’s Flu Activity Notification (FAN) program is, according to the company website, “a comprehensive program that measures the total affected population with upper respiratory illness at the national level down to 135 markets.”

Within the past week, spurred by new data from the Centers for Disease Control and Prevention, increases in flu incidence around the nation, including Connecticut, have been reported.  The state Department of Public Health (DPH) reports a total of 444 positive influenza reports for the current season. Influenza was reported in all eight Connecticut counties: New Haven (141 reports), Fairfield (137), Hartford (68), Litchfield (30), New London (24), Middlesex (22), Windham (13), and Tolland County (9).

According to the CDC, widespread influenza activity was reported by 36 states, including New York, New Jersey and Massachusetts, in addition to Connecticut. As of last week, a total of 180 hospitalized patients with laboratory-confirmed influenza have been reported in Connecticut, DPH data indicates, with 19 associated with Type A (H3N2) influenza, 153 with Type A (subtype unspecified), and 8 with Type B. No flu-associated deaths have been reported to date in Connecticut, although the CDC reports more than a dozen deaths nationwide.

Public health numbers and marketing numbers are vastly different, with DPH reporting that “Connecticut influenza activity has been increasing during the last several weeks," but at levels in the hundreds statewide, not tens of thousands in a single city.  Advertisements for Puffs tissues in other major markets include these triple-digit numbers:  904,564 in Philadelphia, 369,631 in Detroit, 132,047 in Milwaukee, 157,298 in Kansas City and 348,801 in Columbus

“FAN provides critical status levels for each regional market area, reflecting seasonal severity and potential spread rate of illness throughout the season. With consumers only purchasing cough-cold and flu-related products when afflicted, this data is vital for maximizing ROI on promotions, marketing, product placement, and supply chain. The FAN program offers retailer-specific reporting as well, designed to each retailer’s specific trading area and distribution network,” the IMS website indicates.

The website goes on to explain that “For today's consumers, managing health is often a do-it-yourself project. IMS Health provides the most in-depth and reliable information and tools available to monitor health and make informed decisions about care.”

Founded in 1954, Danbury, Connecticut-based IMS is now the largest vendor of U.S. physician prescribing data, according to the company’s website. IMS pays pharmacies for anonymized prescription data, which it sells to drug makers curious about individual doctors’ prescribing habits.

IMS Health Global Headquarters remain in Danbury, at 83 Wooster Heights Road. The company website lists more than two dozen locations throughout the United States and in Canada, Japan, China, Latin America, Asia Pacific, North Europe and Africa, South Europe and the Middle East, Central Europe and Eastern Europe.

Company President Ari Bousbib points to IMS Health’s 10,000 professionals as their “most valuable asset. They include clinicians, epidemiologists, technologists, software engineers, data scientists, health informatics specialists and services experts—all with a deep understanding of customers and local markets around the world.”

The company does consulting work and trend analysis of the drug business. That portion of the company is growing faster than its data business, driving the 4.1 percent increase in the company’s total revenue last year, according to published reports. IMS Health became a public company last April, following four years as a private company.  As a corporation, IMS Health has made support for cancer prevention, treatment and research a focus of corporate philanthropy efforts.  That support has included major contributions to the Connecticut-based Hole in the Wall Gang Camp, for children with cancer.

Pediatric I.V. Backpack Invented by 11-Year-Old Passes Another Milestone

Eleven-year-old Kylie Simonds of Naugatuck sought to raise $50,000 to manufacture a working prototype of the pediatric chemo back-pack she invented.  In just five months, she has.  Her gofundme campaign, which began on July 22, now stands at $53, 134. Kylie is a cancer survivor, and designed an I.V. backpack for children on chemotherapy, receiving transfusions, or other medical reasons.  Her goal was to improve mobility – to make moving around easier, eliminating the traditional I.V. poles. 

Kylie was challenged to come up with an invention through her school (Cross Street School) and the Connecticut Invention Convention, held annually. More than 130 Connecticut schools participate, creating over 10,000 young inventors each year. Kylie's invention was chosen by her middle school teachers, among others, and she attended the Invention Convention, where over 700 of the top inventions were displayed and many selected for awards and recognition.

Kylie's invention received four awards, including the "Patent Award", the highest award at the convention. The Patent Award has allowed Kylie's invention to be submitted to the US Patent & Trademark Office with the sponsor covering all costs.

Her accomplishment was recently noted in the Bulletin of the Connecticut Academy of Science and Engineering, and has been featured in news media stories in Connecticut and beyond.  Last month, she was among ten young people (she was the youngest) honored as “women in tech” at the Women of the Year Awards sponsored by Glamour magazine.

With help from her father, Kylie is now doing R&D to make the prototype.  She has found numerous infusion pumps that will suit this idea but the cost for them is thousands of dollars.  For example, the controller device will need to be customized to be mobile and also small enough to fit in a backpack.  Additionally, the backpack will need to be designed to support both the IV infusion pump and the carry rod.

Kylie, the oldest of three children in her family, underwent 46 weeks of chemotherapy and is in remission from rhabdomyosarcoma, a cancer that affects the soft tissues and connective tissues or bones.

“I used to have to use the IV poles and I always tripped over all the wires,” she said. “It was hard to walk around and I always had to have someone push it for me because I was kind of weak when I was in chemo.”

She hopes to begin production of lines of the backpacks for boys and girls, which will incorporate animal features into the design to make them fun for young children.  Next would be researching designs for a backpack line for teens and young adults.

A total of 1,289 people have donated to her fundraising initiative, which remains active, according to the webpage.  Kylie has indicated that all donations in excess of her $50,000 goal will go towards the manufacturing of the “first usable I.V. backpacks.  EVERY PENNY!”

Planning Underway for 2015 White House Conference on Aging; Connecticut Has 7th Oldest Population

Next year will be the 50th anniversary of Medicare, Medicaid, and the Older Americans Act, as well as the 80th anniversary of Social Security. It will also be the year when the White House will convene the 2015 White House Conference on Aging. The Conference will be of particular interest in Connecticut, currently the 7th oldest state in the nation based on median age.  The state is undergoing “a permanent and historic transformation in its demographics,” according to the state’s Legislative Commission on Aging (LCA).

The first White House Conference on Aging was held in 1961, with subsequent conferences in 1971, 1981, 1995, and 2005. These conferences have been widely viewed as catalysts for development of aging policy over the past 50 years.

The White House is “fully committed,” to conducting a 2015 conference, and is moving forward developing plans.  Officials intend to seek broad public engagement and work closely with stakeholders in developing the conference, viewed as “an opportunity to look ahead to the issues that will help shape the landscape for older Americans for the next decade.”

Given the advances in technology and social media in the past decade, the 2015 Conference is expected to use web tools and social media “to encourage as many older Americans as possible to participate,” according to White House officials.

Among the key issues likely to be included are: retirement security; healthy aging; long-term services and supports to help older adults remain in their communities; and preventing financial exploitation, abuse, and neglect of older adults.

According to the Connecticut for Livable Communities report, issued earlier this year by the LCA, the state’s 65 and older population is projected to grow by 57% between 2010 and 2040. During the same period, Connecticut’s 20- to 64-year-old population is projected to grow less than 2%.

“In 2010, there were 4.35 working-age people for each person age 65 and older in Connecticut,” according to the CLCA. “In 2030, there will be only 2.75.”  More than one-third of the Connecticut population is over the age of 50, according to the report, and that proportion continues to rise. Residents born in Connecticut today, the report indicates, can expect to live to be 80.8 years old—the third highest life expectancy in the nation.

Nationally in 2013, there were 44.7 million Americans aged 65 and over and 6 million aged 85 and over.  Over the next 50 years, the number of people aged 65 and older is expected to more than double to 92 million and the number of people aged 85 and older is expected to triple to 18 million.

Among the key areas expected to be highlighted during the Conference, according to the White House website:

• Retirement security - Financial security in retirement provides essential peace of mind for older Americans, but requires attention during our working lives to ensure that we are well prepared for retirement.
• Healthy aging will be all the more important as baby boomers age. As medical advances progress, the opportunities for older Americans to maintain their health and vitality should progress as well and community supports, including housing, are important tools to promote this vitality.
• Long-term services and supports - Older Americans overwhelmingly prefer to remain independent in the community as they age. They need supports to do so, including a caregiving network and well-supported workforce.
• Elder justice - Seniors, particularly the oldest older Americans, can be vulnerable to financial exploitation, abuse, and neglect. The Elder Justice Act was enacted as part of the Affordable Care Act, aimed at protecting seniors from scam artists and others seeking to take advantage of them.

In 2013, there were 75.9 million baby boomers (people born between 1946 and 1964) accounting for almost one-quarter of the population. Baby boomers began turning 65 years old in 2011.  Between 1980 and 2013, the centenarian population more than doubled from 32,194 in 1980 to 67,347 in 2013.

Between 1990 and 2013, the labor force participation rate of people age 65 and over increased from 12% to 19%.  Among the population age 65 and over, there are 128 women for every 100 men. At age 85 and over this ratio increases to 196 women for every 100 men.

Earlier this year, Cecilia Muñoz, Assistant to the President and Director of the Domestic Policy Council, announced that Nora Super will be leading this effort as the Executive Director of the 2015 White House Conference on Aging.

Additional information can be obtained by contacting: White House Conference on Aging, 200 Independence Avenue SW, Suite 637D, Hubert H. Humphrey Building, Washington, DC  20201, (202) 619-3636, info@whaging.gov. Individuals can also sign up for updates as plans develop, at https://public.govdelivery.com/accounts/USWHCA/subscriber/new?topic_id=USWHCA_1

Individuals with Depression Not Seeking Help from Mental Health Professionals, Study Finds

As the public conversation about mental health continues, new federal data released by the Centers for Disease Control and Prevention suggest that nearly two-thirds of individuals who have severe depression do not seek the assistance of mental health professionals. The report, by the National Center for Health Statistics within CDC, also found that people with mild depressive symptoms, as well as those with moderate or severe depressive symptoms, reported difficulties with work, home, and social activities related to their symptoms. For those with severe depression, nearly 90 percent reported such difficulties.  Nearly 3 in 4 with moderate depression also reported having difficulty in those everyday situations.

Studies have shown that the most effective treatment for depression, especially for severe depression, is a combination of medication and therapy. Although medication can be prescribed by a primary care physician, therapy is generally provided by a mental health professional.

The study, which covered 2009-2012, found:

• 7.6% of Americans (aged 12 and over) had depression (defined as moderate or severe depressive symptoms in the past 2 weeks). Depression was more prevalent among females and individuals age 40–59.
• About 3% of Americans (aged 12 and over) had severe depressive symptoms, while almost 78% had no symptoms.
• People living below the poverty level were nearly 2½ times more likely to have depression than those at or above the poverty level.
• Almost 43% of persons with severe depressive symptoms reported serious difficulties in work, home, and social activities. Of those with severe symptoms, 35% reported having contact with a mental health professional in the past year.

According to the National Institutes of Health, more than 20 million people in the United States have depression. Its symptoms go beyond feeling sad for a few days, and interfere with people's daily lives, causing energy loss, feelings of worthlessness, problems with sleeping, or thoughts of death or suicide.

A report by the Connecticut Department of Public Health (DPH) issued earlier this year found that 1 in 6 Connecticut adults (16.7 percent) reported having been told they had a depressive disorder. Women were significantly more likely to have been told they had a depressive disorder (19.0 percent) compared to men (14.2 percent).The likelihood of having been diagnosed with a depressive disorder decreased significantly for each increase in income range, the study found.  The DPH data is from 2012.

According to the CDC, depression is a serious medical illness with mood, cognitive, and physical symptoms. Depression is associated with higher rates of chronic disease, increased use of health care facilities, and impaired functioning.  Its causes may be genetic, environmental, psychological or biochemical.  Numerous studies have also shown that individuals with depression have more functional limitations than those without depression. The DPH study points out that “Depressive disorders may interfere with a person’s work and daily activities and prevent them from functioning normally. Some forms of depression develop under unique circumstances; others occur in episodes or may be longer-term.”