Diabetes Camp Programs: A Look Behind the Curtain at the Financial Side

The U.S. is home to over 350 camping programs that provide children with type 1 diabetes mellitus (T1D) the opportunity to spend time away from home with other children who have T1D, under the supervision of diabetes health care providers. Many of these programs offer summer residential camping programs for children ages 5 to 16 that last for one to two weeks. Most of these camping programs feature outdoor activities such as swimming, canoeing, ropes courses, hiking, archery and other activities that encourage children to walk more and spend more time outdoors, while at the same time limiting hours spent using electronic devices. The benefits of these programs for the campers, their families and the staff who oversee campers’ well-being are numerous.1-3 Like the layers of an onion, the benefits can best be appreciated when they are pulled back and examined one at a time. Also included among the benefits to campers are friendships with fellow campers, exposure to role models in counselors and medical staff, total immersion in an environment where everyone in camp is tracking food, exercise, blood glucose management and insulin therapy, and “teachable moments” that occur by observing others who use different diabetes technology (insulin pumps, blood glucose monitoring devices, continuous glucose monitors and closed-loop systems) not worn by the camper.4,5 Families experience a much-needed “break” from the constant vigilance required when caring for a child with T1D.6 Health care providers and health care students benefit from the opportunity to work elbow-to-elbow with professionals who treat children with T1D every day, who are experienced in starting newly diagnosed children on new insulin regimens, and who are early adopters of new diabetes technology.7,8

Ever-present in the background of such an undertaking are the financial resources required to fund the operation and ensure that campers are placed in a safe, well-supervised environment. A well-managed camp requires facilities that are clean, thoroughly inspected by accrediting agencies and aligned with the needs of the campers. Food service operations must be maintained at a high level of quality to ensure safe operation and avoid the possibility of food-borne illnesses or exposure of campers with food allergies and sensitivities to foods that are not allowed. Staff must be vetted, well-trained and prepared to handle many possible types of events in addition to routine daily activities: medical interventions, emergency management, water safety and the often-unpredictable concerns of campers (and parents) over issues such as homesickness, bullying, co-existing medical conditions, leadership, staff development and community living. The cost of ensuring that all diabetes camping programs meet this very high standard of excellence is reflected in the cost of attending camp. In reality, the fees that campers pay reflect only a portion of the actual cost of running the camping program.

The Diabetes Education & Camping Association (DECA) is a nonprofit organization that serves all diabetes camping programs in the U.S. and many others around the world. The executive director of DECA, Terry Ackley, states that when the full costs of attending camp are evaluated, the fees charged to campers reflect a significant financial bargain, underwritten by the philanthropic contributions of many people and civic organizations, and further enhanced by scholarships offered to families with financial need: “Most camps adopt a policy that no child shall be denied access to camp because of financial inability to pay the fees.” One camping organization that commented on its fee structure indicated that the fees charged to campers would actually fund only one-half of the total costs of the entire program. Costs include large outlays for the rental or upkeep of the camp facilities, food, salaries of full-time camp staff, including lifeguards, activity personnel, arts and crafts instructors, and archery and ropes course staff. In addition, every camp organization faces the expenses involved in securing insurance coverage, maintaining accreditation by the American Camp Association, the costs of medical supplies used at camp and the salaries of the small number of employees of the diabetes camping organization.

In the U.S., the largest single camping organization is the American Diabetes Association (ADA), which operates 46 diabetes camp programs around the country. Most of the other 80-plus diabetes camping organizations in the U.S. are local, independent, nonprofit organizations started originally by physicians or families of children with T1D. Many of these individual nonprofit organizations that run diabetes camping programs devote much of their time and energy during the “off-season,” when camping programs are not in session, to fundraising efforts. The organizations must raise the funds to make up the difference between the actual total costs of camp and the amount raised by fees from campers, and the scholarships for those children who have financial need. Civic organizations, such as the Lions Clubs International, and philanthropic organizations, such as the Helmsley Charitable Trust, have been important partners in donating funds for camps in many locations. Pharmaceutical companies and medical device manufacturers donate millions of dollars in goods to diabetes camps each year. A single camp with 200 children with T1D may use as much as 40,000 units of insulin in the course of one week!

When a camper and his/her family make a decision to attend a summer diabetes camp program for the first time, the cost of the camp may seem formidable. For many children, cost-comparisons between different diabetes camps are not the deciding factor in whether or not to attend camp. Rather, recommendations from a trusted health care provider usually start the process, and then the geography of the camp’s location and the timing of the camp’s schedule often determine if attendance at the program will be possible. Today’s children have busy schedules. For children with T1D, whose families fall at the lower end of the socioeconomic scale, the financial challenge of attending camp, as well as the diminished exposure to both friends and health care providers who are part of the diabetes camping organization network, can be a significant hurdle to overcome.

Another factor at work in the decision to attend diabetes camp is the age of the child at diagnosis. Children diagnosed with T1D before the age of 5 can spend many, many years attending camp and often climb the ladder of staff administration by serving as counselors-in-training (CITs) and counselors in their teenage and college years. Many former campers find careers in the health care field and eventually return to camp as adults, serving on the medical staff. One “benefit” that many children diagnosed with T1D at an early age can experience is a very robust development of medical knowledge and maturity before finishing high school. Their experience and maturity may set them apart from their peers and put them a step ahead of others when applying for positions in medically related careers and academic programs.9

In contrast to these children diagnosed with T1D at an early age, children diagnosed with T1D late in their teenage years, or as college students or young adults, have missed the opportunity to attend traditional diabetes summer camps. Often these persons with diabetes (PWDs) and their families and loved ones struggle to find support groups and supportive friends who fill the role that the diabetes camp community fills for so many children diagnosed with T1D at an earlier age. New alternative diabetes camping programs for older campers, college peer-support groups such as the College Diabetes Network, and programs focused on the needs of young adults with T1D are in development, and there is a real need for more such programs.

Several aspects of the financial side of diabetes camping organizations have benefited from advances in communication and social media in recent years. The improved access to information from diabetes camps across the U.S. to both the parents of children with T1D, and to individuals and charitable organizations interested in supporting the diabetes camping organizations, have made it possible to learn where and when camping programs are scheduled. In addition, these websites allow individuals and potential supporters to learn about fundraising efforts for either individual campers or for diabetes camping organizations.

Both DECA and the ADA have created easy-to-use links that provide direct access to the web sites of diabetes camps across the nation: DECA: https://www.diabetescamps.org/find-a-camp ADA: https://www.diabetes.org/community/camp/find-a-camp

These links provide contact information that will allow families to find out what the cost is per camper and what policies are in place for financial assistance. Some camping programs encourage campers to proactively raise funds to underwrite their fees by sponsoring walks, auctions, dances, birthday fundraising drives and other events where children and their families and friends can participate. The proceeds of these events can offset the cost of camp fees for that child or be used for the entire camp program.

When the overall financial operations of diabetes camping organizations are considered, fees charged to campers do represent an important part of the picture, but certainly they do not reflect the total costs expended. Contributions from civic organizations, philanthropic sources and fundraising events offset an important part of the annual budget, and ultimately these contributions decrease the costs passed on to campers and their families.

The future of diabetes camping programs is difficult to forecast, as the cost of doing business continues to escalate, especially in any enterprise that involves health care delivery and the supervision of young people in a residential community, such as a camp. The year 2020 has been a remarkable one in so many ways, because of the restrictions placed on social gatherings and educational institutions by the COVID-19 pandemic. Diabetes camping programs were among those facing a seismic change as a result of the pandemic. Many diabetes camping programs have adopted to the situation with replacement of residential camping sessions by “virtual camp” experiences that can be viewed from home. The impact of these changes on the financial health of the diabetes camping industry and the well-being of our young people with T1D who attend camp are not known yet.

The successes of past and current diabetes camping programs are reflected in the lives of hundreds of thousands of PWDs and their families, former counselors and medical staff.3,10 An economic argument may be made that millions of dollars in health care savings have been realized as a result of the lessons learned at diabetes camps. Beyond the economics involved in running a diabetes camp program, the benefits gained by children with T1D are priceless.

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About our experts

Dennis Pillion, PhDDennis J. Pillion, PhD, Professor of Pharmacology & Toxicology School of Medicine, University of Alabama Birmingham, Birmingham, Alabama

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