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  The Alpha-1 Patients and Family This month we will talk about how to go about fundraising the funds necessary for a transplant, organizations that can be a support to the transplant families, drug assistance and the follow-up care after transplant. Fundraising It may be necessary for you to raise additional funds through the use of public fundraising to help you with bills that are not covered by your medical insurance. It is a good idea to enlist assistance in planning, promoting and carrying out these activities. Contact local newspapers or radio and television stations as well as the support of merchants and other sponsors to promote and contribute to your event. You may call on your friends, neighbors, religious groups, or other volunteer or community groups to help with the fund raising, Keep in mind that there are legal and financial laws and guidelines, so check with your city or county governments or legal advisor. You should have a separate bank account or establish a fundraising account to be used only for transplant related expenses-medical, prescription drugs, and travel. Never mix public donations and personal money. Remember sometimes donated money may be considered as income and therefore taxable. In such cases, if on Medicaid you might lose your eligibility. If an organization is charge of the fundraising be sure that you have a written agreement that will be used only for your medical expenses and that you have access to the money when you need it. It will be helpful to have a legal advisor go over any papers you are required to sign. If you use a fundraising organization here are some questions you need to ask:
Organization that support transplant families Since no one group will be able to provide all the financial assistance through grants or fundraising, it may be necessary to seek specific help for transplant related costs such as transportation, food and lodging, or medicines through other resources as well as information. Here is a list of websites you may find helpful:
Prescription Drug Assistance Many drug companies provide medications for patients who need financial assistance. The Partnership for Prescription Assistance lists some 48 programs and states that are eligible to receive assistance, this includes what drugs are covered and how to receive assistance. To request a copy of these programs call 1-888-477-2669 or go on the Internet to www.pparx.org. or check with your local library. Your transplant team can also help you find these programs. Medicare Part B will pay 80% of your post transplant anti-rejection drug costs if you are covered by Medicare at a Medicare approved center. Medicare Part D will help with the other drugs, but you will have co-pays and the doughnut hole to pay. Some of the drug companies do not assist patients who are eligible for Part D, so do not plan on their aid in paying for drugs. Each company is different. Questions to ask about prescription drug assistance:
The Cost Of Care Following Transplant: There are several programs and initiatives that can help you finance your care after transplantation:
Vocational Rehabilitation The goal of rehabilitation is to prepare people with disabilities to return to work, enter a new line of work, or start working for the first time. You are eligible if you have a physical or mental condition that makes it difficult to work, but you would be able to work after receiving rehabilitation. In my case I completed an application and was evaluated to help me prepare for work. My education to become a therapist was paid for by our local Department of Rehabilitation Services because my previous occupation as an interior decorator could compromise my newly transplanted lung due to the chemicals found in the materials I used in the business. Contact your transplant social worker or your local (VR) or (DRS) agency for help in applying. Patient Services Here are some of the rehabilitation services that each state provides through (VR) or (DRS) agencies, which are funded by the State and Federal governments.
Assessment and rehabilitation plan The (VR) or (DRS) will assess your job skills, abilities and aptitudes through medical, psychological and vocational testing. They will then help you develop a plan to enhance your skills and abilities This plan may include the following:
Training and assistance Depending on your needs you may require physical and occupational therapy; use of physical aids or devices; training for a specific type of work requiring classroom instruction or individual tutoring. Job seeking and placement You may need to be counseled in job-seeking skills-resume writing or interviewing techniques. I know at the time I was hired for my first job back in 1968, all I did was fill out an application and talk with the personnel department manager. Even after placement in a job if you have difficulties you can receive post-employment services. Social Security Coverage for the Disabled Before or after transplant should your medical condition prevent you from working, you may qualify for benefits from Social Security. Under this program:
Applying for disability Apply for disability as soon as possible as you cannot collect benefits until your sixth full month of disability. You may be able to qualify for benefits retroactively (dating back to the disabling event). The claims process takes 60 to 90 days. During that time Social Security will be gathering your medical information and assessing your ability to work. You may apply by telephone, mail or in person at any Social Security office. If additional documentation of your medical condition is deemed necessary Social Security will pay. Once your benefits start your case will be reviewed periodically to see if you are disabled. Your benefits will end if
Work incentives Most people with disabilities want to work. After your transplant and you return to work there is a trial period, of 9 months over a 5-year period. If you complete the 9 months, but are still defined as disabled (up to 36 months after the trial period ends), you may receive benefits for any month that your earnings drop below $810. Americans with Disabilities Act The (ADA), of 1990, prohibits discrimination against people with disabilities who wish to work. To be protected you will need to have physical or mental impairment that restricts one or more major life activities. You must be able to do functions of your current job or the job you are seeking, with reasonable accommodations. The ADA applies to private companies, State and local government agencies and labor unions that employ 15 or more workers for more than 20 weeks. Federal Rehabilitation Act (FRA) Finally, the FRA offers protection against discrimination by organizations that receive more than $2500 in Federal funds. Many State and local governments have disability laws similar to the ADA and the FRA, but vary in coverage by jurisdiction. Check with a local attorney to determine whether you state or local disability laws provide you with more protection. Next months presentation will be on “Life After A Transplant”. We will cover the Transplant Recovery, Mediations, Post-Transplant Tests, and Rehabilitation. If you would like a copy of “Partnering With Your Transplant Team, The Patient's Guide to Transplantation”, send an email request with your name and address to abenzinger@alpha1advocacy.org with Transplant Book on the subject line. We'll ship one right out! Disclaimer: The information presented on Ask Pat is not intended to be a substitute for professional medical advice or to replace your relationship with a physician. For all medical concerns, you should always consult your doctor.
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