Since we both were young, we’ve been dedicated volunteers, assisting in local community events through our scout troops and continuing our efforts through college and beyond. As we’ve gotten older, what has amazed us the most are the countless opportunities to give, as well as the generosity of others. With so many opportunities, the hardest thing, we’ve discovered, is deciding just what to do.
Patient advocacy groups exist in almost every size community in America. We think of them as organizations of concerned and knowledgeable individuals with the means and abilities to do something about a particular issue. The groups needing your attention aren’t limited to large organizations. Some of today’s modern charities are small and dedicated to particular needs in your community or the ravages of a specific disease. The goal of each organization is to fulfill a need not currently being met by governments, providers, or currently existing charities. And they’re looking both to help you and to be helped by you.
Many of these organizations are dedicated to finding cures for specific diseases or offering information and medical attention in times of crisis. Thanks to Clara Barton, the U.S. Congress gave the Red Cross a federal charter in 1881. (It began in Europe in 1864.) Not only is the Red Cross a disaster relief organization, it’s the biggest blood bank in our country. The first disease-specific charity was the March of Dimes, which began in 1938 with a mission to cure polio. Today, it fights to find cures for birth defects. In 1946, UNICEF was started by the United Nations to provide health care, clothing, and food to European children facing disease and famine.
You may recognize names like the American Cancer Society and the Leukemia/Lymphoma Society, but perhaps you’ve never heard of Project ALS. Each organization has a different mission and goal. The American Cancer Society not only raises money to research cures, but it’s also extremely active in cancer prevention, such as recommending colon cancer screenings for everyone over the age of 50. The Leukemia/Lymphoma Society, on the other hand, focuses primarily on research. Then there’s Project ALS, which fights what’s more commonly known as Lou Gehrig’s disease. Jennifer Estess, the brave, young woman who started Project ALS, worked vigilantly to find a cure until her own death from ALS in 2003. Her fight continues today.
The opportunities to give of yourself are infinite. What these groups need most from you is your time and energy. They also need your expertise on everything from maintaining their headquarters to research to fundraising. Look to each organization and group and find out what it really does and what help it needs. If you’re more interested in finding disease cures, focus your efforts on research organizations. Do you want to help individuals currently suffering from disease? Support a local chapter that provides transportation services to chemotherapy patients or meals to infectious disease sufferers. No matter what group it is that you support, your efforts will make a difference.
If you’re looking into small, local organizations, make sure you do your due diligence before joining the volunteer ranks. Just because an organization is nonprofit doesn’t mean there isn’t a financial motive behind the organization. Look out for advocacy groups run by individuals who are also trying to “sell” you or someone else a particular product or service. Verify with the IRS (www.irs.gov) to be sure that the charity has nonprofit status. Although every organization begins with a noble purpose, even the most well-meaning individuals can be led astray.
At the same time, if you’re currently ill, don’t forget to ask what these organizations can do for you. Log on to the Web sites for the organizations dedicated to fighting your illness. Check with your health care provider for recommendations. Your provider should be able to give you information and resources at the very least.
If you renewed your driver’s license recently, you were probably asked if you’d like to be an organ donor. Donations, however, aren’t limited to organs. Every time you give a pint of blood, you’ve made a donation. Although the donation of an organ can mean the immediate difference between life and death, gifts of blood and tissue potentially have even longer-term benefits.
The first donations were tissue, including blood. Thanks to Joseph Lister, antiseptic was discovered, which gave us sterile surgery environments. Anesthesia gave us the ability to put patients to sleep. Next, we learned more about the immune system of the body. This made organ donations possible. The first successful transplant was a cornea in 1905 in Olomouc, Czech Republic. Since then, we’ve seen successful organ transplants of kidneys in 1954 (Boston, Massachusetts and Paris, France), livers in 1963 (Denver, Colorado and Cambridge, England), a pancreas in 1966 (Minneapolis, Minnesota), a heart in 1967 (Cape Town, South Africa), bone marrow in 1968 (Madison, Wisconsin and Minneapolis, Minnesota), a lung in 1981 (Stanford, Connecticut), a hand in 1999 (Louisville, Kentucky), and even a face in 2005 (Amiens, France).
Why are organ donations so important? Transplants save lives and preserve limbs, the goal of every physician. They give chronically, and often terminally, ill patients a chance at life. Organ donations are run by groups at the state level. To find out more about the donation opportunities where you live, log onto http://organdonor.gov.
If you’ve never given blood, we’re sure that you know someone who has. There’s been such great success with the collection and storage of blood that local blood drives are commonplace. We see people line up to give blood after tragedies like September 11. In addition to donating for others, you can make self-donations in anticipation of an upcoming surgery or to help family and friends. Keep in mind, though, that if you’re making this type of donation, it takes three days to process blood. For this reason, a general blood donation may be better and will help not just you or your loved one, but everyone.
When you head to your local blood drive and sign up, you’re giving a lot more than a pint of blood. You’re actually giving
White blood cells—. These are generally not used.
Red blood cells—. This is what we think of most and, usually, why one receives a blood transfusion.
Platelets—. Platelets are cell products that circulate in your blood and are necessary for blood clotting and to reduce bleeding or bruising. It takes donations from five to eight people to have a single dose of transfusable platelets.
Plasma and coagulation factors—. These are critical components for people with liver dysfunction and may also help people with blood-clotting problems such as hemophilia. A common form is “FFP”—fresh, frozen plasma.
Adult stem cells may also be taken from blood and used in a transplant. They are not the stem cells in the news that come from embryos. Such donations are done only under special circumstances (such as to benefit a patient with certain leukemias, lymphomas, or primary bone marrow failure disorders).
Donated tissue can be used to search for common responses to medications. The goal is to determine what treatments will work for some patients and not for others. To learn more, log onto the Web site for The American Cancer Biorepository at http://theacb.com.
Bone marrow is a source of both red and white blood cells and is found in the soft, fatty vascular tissue that fills most bone cavities. Because bone marrow is so rich in blood cells, donations are extremely important to individuals suffering from certain diseases, most notably leukemia. Donations can be for yourself (autograph) or another (allograph). If you’re making a donation for another, it can be for a specific person (in which case the donation would be immediate) or for the general population. A donation to the general public is made by becoming part of the national bone marrow registry. To become a member of the registry, you submit a sample and wait to make a donation until a match is made. Whether or not you’re called is a matter of timing and matches. Bone marrow matches are determined on a six-point system. To date, most bone marrow donors have been Caucasian, leaving other racial groups underrepresented and in need of donors. Why does race make a difference? Because different races often have different bone marrow characteristics. If you’re interested in becoming a donor, log onto the Bone Marrow Foundation site at www.bonemarrow.org.
For some, the ultimate donation is a contribution of their body to scientific research on their passing. It’s a generous, thoughtful, and important gift to the scientific community. There are many organizations accepting donations. If you’re interested, check with your physician for suggestions in your community.
If you’re squeamish about needles or can’t give blood, what can you do? You can share your personal information and protected health information. Information donation is critical material for researchers. Your information covers everything from your current condition to your complications to your outcome—and everything in between.
You can donate your information by participating in studies and trials. Studies are conducted every day on everything from sleep patterns to exercise habits to the effects of stress on health. The goal is to find out why a particular population or group of people does what they do or why this works and that doesn’t.
Walk across any college campus, and we’re sure you’ll see solicitations to participate in trials. Because you may be paid to participate, and college students are almost always looking for money, it’s a natural fit. There are ads on television, solicitations online, and requests for participation in newspapers from coast to coast. How can you find out what studies are being conducted and how you can participate? Because there isn’t a single Web site dedicated to research trials, search for research studies in your community. In addition to studies, there are many clinical trials discussed in Chapter 6, “Personal Wills: Drugs, Diets, and Devices.”
Although this information can be of great service to researchers, it can also be used for other purposes, such as to market certain products to you. Be sure your information is going to a trusted recipient who won’t sell your information (unless you give him or her permission to sell it). With that said, it would be unfair not to tell you that a great deal of your information, including health information, is collected regularly by merchants. Every time you buy a bottle of cough syrup and use your frequent shopper’s card, the grocery store has a record of your purchase. The same is true for your health insurance billing information. Your insurer keeps a record of what medications are paid for by your insurance, as well as the tests you take. Although HIPAA requires that your personal health information remain private, aspects of it aren’t, including information recorded on some online medical registration Web sites that you, not your provider, complete. In addition, if you’re diagnosed with an infectious disease, the state where you live may require that it be reported to the state health board. There’s not much you can do about this, but because it’s your information, you should know about these practices.
One of the positive ways that your personal health information may be used is for the study of quality further facilitated by the Patient Safety and Quality Improvement Act of 2005. This act established patient safety organizations, or PSOs, that keep track of mistakes and subpar treatment of patients. This information has, in the past, been underreported. With this act, that may change. This information may help us find solutions to quality problems in the future. As it’s currently envisioned, information will be delivered to a PSO, without the threat of liability or other action as a result of mistakes, thus allowing a free flow of information to problem solve. The PSO should be able to assist the reporting entity with finding solutions to the problems. The focus is on the delivery of care and the improvement of quality. This is an exciting time for both patients and providers.
No matter how you decide to donate, your donations are not only appreciated, but they’re also incredibly useful. So, again, thank you.