New Program Offers JumpStart in Care for Kids Newly Diagnosed with Diabetes
BOSTON — May 2, 2002 — A new program at Joslin Diabetes Center in Boston will target children with newly diagnosed type 1 and type 2 diabetes to provide a combination of free care and "care ambassadors" helping to coordinate that care to enable kids to get a "JumpStart" on a lifetime of good health with diabetes.
"Care ambassadors" will now routinely contact the patients' families to head off problems in the critical and frequently chaotic first year of care. The goal is to help children and their families establish patterns of lifelong diabetes management that will enable the youngsters to avoid the potentially debilitating short- and long-term complications of diabetes.
Established with the assistance of grants from four pharmaceutical and medical device companies, the program's goal is to make sure that "every child with diabetes gets off on the right track," says Lori Laffel, M.D., M.P.H., Chief of Pediatric and Adolescent Diabetes at Joslin. A portion of the companies' funding, in fact, will be used to ensure that children who have problems with access to Joslin due to insurance coverage can still be seen at the Center. (Because Joslin is not a hospital, it does not have access to the Massachusetts free care pool to help cover the costs of seeing uninsured patients).
"Research shows that children and young people with diabetes who develop good management skills early in their disease are more likely to enjoy a lifetime of better health," she says. "They're less likely to suffer the long-term consequences of diabetes, such as heart disease, stroke, blindness and kidney failure."
For this reason, the Harvard-affiliated Joslin solicited help from the pharmaceutical and medical device industries to see if they would fund a program to help ensure that any child with diabetes can get access to Joslin's style of care, which includes treatment by an entire team of professionals, and now, use of "care ambassadors." Four pharmaceutical companies answered the call with an enthusiastic "yes:" Novo-Nordisk, Medtronic Minimed, Eli Lilly and Company, and Lifescan.
Treating diabetes in children
Type 1 diabetes is the second most prominent chronic disease in children (after asthma), with about 13,000 new cases diagnosed in the U.S. each year. People with type 1 diabetes must take daily insulin injections to survive, and use diet, exercise and home blood sugar monitoring to manage their disease. Type 2 diabetes, which for many years developed primarily in adults over 40 who are overweight, is growing at epidemic rates now in children and teens as well. In some cases, type 2 diabetes can be controlled with exercise, weight loss, diet and home blood sugar monitoring. Frequently, however, insulin injections are required as few of the other medications used to treat type 2 in adults are approved for use in children.
Joslin specialists believe that treating diabetes in kids requires physicians who are pediatric endocrinologists — a specialty that is in short supply nationally. It also requires nurses, dietitians and exercise specialists who provide needed education on such topics as home blood sugar monitoring, nutrition, injecting insulin, what to do when a child has a cold or the flu, and incorporating exercise and athletics into everyday diabetes management. Mental health professionals are on hand to help patients and families cope with the unremitting demands of day-to-day diabetes care. All talk frequently with the patient's family by phone in addition to regular medical visits as the family works to get the child's new diabetes under good control.
Care ambassadors key to care
Key to the JumpStart program's success, Laffel and others at Joslin believe, will be another group of staff members called "care ambassadors." Each new pediatric diabetes patient who comes to Joslin in Boston for care will be assigned a care ambassador. While one of the care ambassador's first assignments will be to help guide the new patient to get insurance-required referrals or even apply for state-offered insurance programs for the working poor (if necessary), an absence of insurance will not be a barrier to care. "If the patient has insurance issues or no insurance, that will be a non-issue for us during the first year," says Laffel. "We're committed to getting the child and their family off to a healthy start with this disease, so if needed, we'll see the child for free for the first year."
Joslin funded $260,000 last year in un-reimbursed care for pediatric patients, with philanthropic donations cover much of this cost. The donations from the four pharmaceutical and medical device companies will help Joslin reach even more patients regardless of their insurance status.
Because Joslin's care emphasizes that the child and his or her family are at the center of the treatment program, the care ambassador's role will be to check-in periodically with the family to see how they are doing with the challenges of diabetes care as time passes. "Our care ambassadors will help families with newly diagnosed diabetes by helping to identify small issues before they become big problems," says Dr. Laffel. "While the patient can talk directly to any member of the health care team when they need to, the care ambassador will be contacting the family pro-actively. They will also help to streamline communication between the family and their child's healthcare team when questions arise about blood sugar levels, insulin dosages, or diabetes management in the school, or whatever else comes up."
Previous research at Joslin has shown that the care ambassador model can successfully reduce the development of acute diabetes complications, such as severe high and severe low blood sugars that require hospitalization or emergency room visits. Care ambassadors are dedicated members of the pediatric healthcare team who have been trained in the issues related to the family management of diabetes. They have bachelor's degrees (frequently in an area such as child life specialties) and have received additional training from Joslin specifically in pediatric diabetes management issues. The care ambassadors' services — as well as the frequent phone interactions that other members of the health care team will have with the patient's family as they work to get the intricacies of diabetes care under control — are not covered by insurance. But they will be funded for the next two years through the corporate grants.
Who is eligible for this program?
Any child age 18 and under who has diabetes is eligible if they are newly diagnosed (Joslin defines this as having had diabetes for less than 2 years) and have not received at least a year of care at Joslin yet. Joslin will also consider young patients with diabetes who have had the disease a bit longer, but haven't had access to the type of individualized, team care that Joslin offers. At Laffel's discretion, a portion of the funds may also be used to help patients who have been seen at Joslin longer, but suddenly find that their insurance coverage has changed due to a parent's job change or loss, for example.
While Joslin has centers in about 20 locations around the country, this program is only available at its headquarters location in Boston. Unfortunately, the program does not at the present time include coverage for travel to Boston, or for services that may be related to diabetes but which Joslin doesn't itself provide, such as hospitalizations or certain specialists that are not on staff.
(Click here to read more details about what precisely the program includes. To enroll in the program, call 617-732-2603).
"We know from long experience that during the first year or two after diagnosis, the entire family of a child with diabetes is thrown into immense turmoil," says Dr. Laffel. "The whole family has a lot to learn and they need to learn it all at once. We see this program as one way to help make that process manageable, so that in the end the family is fitting diabetes into their lives, rather than fitting their lives around diabetes."
Companies Supporting the Joslin JumpStart Program
Joslin is appreciative to the four companies below who have provided funds to support the JumpStart Program.
About NovoNordisk
Novo Nordisk is a healthcare company with a major focus in diabetes, producing products including insulins and prefilled insulin syringes. In addition, Novo Nordisk has a leading position within areas such as hemostasis management, growth hormone therapy and hormone replacement therapy. Novo Nordisk manufactures and markets pharmaceutical products and services that make a significant difference to patients, the medical profession and society. With headquarters in Denmark, Novo Nordisk employs approximately 16,000 people in 68 countries and markets its products in 179 countries.
About Medtronic MiniMed
Medtronic MiniMed designs, develops, manufactures and markets advanced infusion systems with a primary emphasis on the intensive management of diabetes. The company's products include external pumps and related disposables, a first-generation continuous glucose monitoring system, an implantable insulin pump, which is currently approved for distribution in the European Community and has not yet been cleared for marketing in the United States, and an implantable sensor, which is in clinical trials. Medtronic MiniMed is also developing new infusion systems to deliver compounds designed to treat a variety of medical conditions. Medtronic, Inc., headquartered in Minneapolis, is the world's leading medical technology company, providing lifelong solutions for people with chronic disease.
About Eli Lilly and Company
Eli Lilly and Company creates and delivers medicines that enable people to live longer, healthier and more active lives. An innovation-driven corporation, Lilly is developing a growing portfolio of best-in-class pharmaceutical products by applying the latest research from its own worldwide laboratories and from collaborations with eminent scientific organizations. Lilly products treat depression, schizophrenia, diabetes, cancer, osteoporosis and many other diseases. They create value for patients, health-care providers and payers, and reduce the cost of disease. Headquartered in Indianapolis, Ind., Lilly employs more than 35,000 people worldwide and markets its medicines in 159 countries. Lilly has major research and development facilities in nine countries and conducts clinical trials in more than 30 countries.
About LifeScan
For more than two decades, LifeScan has been committed to improving the quality of life for people with diabetes through its family of ONE TOUCH blood glucose monitoring products. By eliminating wiping and timing procedures, Lifescan helped bring blood glucose testing out of the laboratory and into the hands of patients. Five years after incorporation, LifeScan joined the Johnson and Johnson family of companies in November 1986. Headquartered in Milpitas, California, LifeScan has manufacturing facilities in Milpitas and Puerto Rico, and employs more than 2500 employees worldwide. Every day, more than three million people depend on LifeScan Meters for their diabetes monitoring needs.
