Answers to Frequently Asked Questions
Welcome to the Frequently Asked Questions (FAQ page). As complicated as our situation is we know there's some questions that always come up. We've tried to answer a few of them here.
If you need more information please contact us at CDM13202@msn.com
Patients awaiting transplants already know that the cost of a transplant is very high. Many patients and families rely on their health insurance to cover transplant expenses, only to learn that various factors in individual cases may jeopardize or limit that coverage. In addition to medical expenses, there are many other "hidden" costs which can quickly strain a family's budget and savings, especially when many of these expenses will continue long after the transplant surgery is over.
There are at least four ways to donate:
Not Tax Deductible
Please also see What is the Difference between the two funds you have listed?.
Your donation to the Chase McGowen restricted transplant fund through NTAF is tax deductible to the extent of the law. NTAF is an IRS 501(c)3 charitable organization.
Your donation directly to The Chase McGowen Medical Assistance Fund is not tax deductible.
You will receive a receipt for tax purposes for your donation to the NTAF fund for donations over $250, or if requested by the contributor of a lesser amount. Charitable donations under $250 do not require a receipt.
The money contributed to the NTAF is a restricted fund. Meaning, one must show proof that the money is being used for the stated purpose. This must be provided prior to reimbursement, and must be kept by NTAF for the IRS. These accounts are monitored by a CPA. 4% of the money is used for overhead.
The money in this fund will be used for any non-covered (by insurance) expenses related to Chase's health care. This includes expenses prior to the lung transplant (because this keeps him healthy for the transplant), the lung transplant itself, and health care after the transplant (anti-rejection drugs, etc.).
(Disclaimer: I am not a medical person, so medical people who read this, please forgive my layman's explanation).
No, but it will extend his life and greatly improve his quality of life. Cystic fibrosis (CF) is a multifaceted disease that primarily affects the way proteins are transmitted through the cell walls (this is a simplified explanation -- there's a lack of bicarbonate at the cell membranes, etc.). While this affects many systems in the body such as the sweat glands, pancreas, and often the reproductive organs, it's most profound effect is the production of thick, sticky mucus in the lungs. While a healthy mucous layer will trap microorganisms, and get rid of them, in people with CF, these trapped microorganisms do not get expectorated or killed very easily by the body's defense mechanisms. Therefore they continue to multiply and wreak great damage, mucus closing off airways and the microorganisms eventually causing the replacement of stretchy lung tissue with non-stretchy scar tissue that does not function the same way. This results in a loss of lung function, and pulmonary disease is almost always the way that CF patients succumb to the disease. But he will no longer have CF in his lungs after the transplant.
While Chase will no longer have CF in his lungs, he will have the pancreatic insufficiency that makes it extremely difficult for him to gain and keep weight on, as well as CF everywhere else in his body (such as his throat, sinuses, etc. but these are no big deal). He is also trading a known set of problems that he's been dealing with for 13 years for a whole new set of risks and unfamiliar problems. See "Lung Transplantation" on "Chase's Illness" page for some examples of the risks associated with it.
While Chase's CF will not be cured, his life will be greatly enhanced, and the problems he will continue to have should be very manageable. There is risk associated with the transplant, but Chase and his parents feel it is well worth it to take these risks. It will add years to his life, and give him the opportunity to have the personal interactions, the many opportunities, events and experiences that make life so worthwhile.
While we are very blessed to have good insurance, there are many expenses that are definitely not now, or may not be covered in the future. Some examples of these items (or likely items where we have no direction yet) are:
Also, the period of time that we have to wait for a lung transplant is indeterminate. Anything could happen.
If Chase develops Chronic rejection and needs another lung transplant after he is too old to be on insurance, this fund is all he has to fall back on.
Chase must maintain the anti-rejection medication for the rest of his life, even when he will no longer be covered under insurance. The money in this fund may be used for this as well.
There are numerous other scenarios that could require the ongoing necessity of these funds.
If you are unsure which fund to donate to, donate to the NTAF fund. While both funds are important for the ongoing care of Chase, the dollars needed are much greater in the NTAF side. The other fund is used to cover other bills and expenses not directly related to the transplant as well as the costs of fundraising. In this way, you can help to keep the ball rolling. Here is a table that explains the differences in the funds:
National Transplant Assistance Fund (NTAF) is a not-for-profit resource serving all organ and tissue transplant patients, their families and the professional community who treats them. NTAF also provides services for patients with catastrophic injury. They provide fund-raising expertise for patients raising money for uninsured medically related expenses and educational information regarding organ/tissue donation.
Established in 1983 by medical professionals, National Transplant Assistance Fund is a private, non-profit 501(c)3 charitable organization.
NTAF assists patients in establishing restricted fund accounts allowing contributions to these transplant funds to be tax-deductible to the extent of the law. Acting as a trustee for locally raised funds, NTAF assures fiscal accountability and appropriate distribution of those funds for medically associated expenses. NTAF retains only four cents of every dollar raised to help defray general office costs and to implement patient services and educational programs.
Chase is in the "I need it now" stage of his lung disease. Dr. Mallory's quote from a letter he generated for me to use in the fund-raising process, "Chase McGowen has been listed for simultaneous lung and liver transplants by our transplant coordinators. This boy was born with cystic fibrosis which has resulted in complications leading to end-stage lung disease and severe cirrhosis with portal hypertension and hypersplenism." We are hoping that the transplant happens ASAP , there is simply no time to waste.
Many Caucasians (1 in 20) are carriers. One may be a carrier and it is likely that they won't know it...this was certainly the case with us. In other words, you may be a carrier right now. However, because the defective gene is recessive, it takes a copy of the defective gene from both parents to have CF offspring. In other words, it is only when a one-in-twenty carrier has a child with another one-in twenty carrier that they then have a 25% chance of having a non-CF child, a 50% chance of having children who are symptomless carriers (like their parents) and a 25% chance of having a child with Cystic Fibrosis. Because of this 1 in 20 phenomenon, it can skip multiple generations before it shows up again, and it wasn't even identifiable until the 1940's.