February 3, 2013
• Relocating to be near the transplant hospital
• Pulmonary rehabilitation (most insurance only covers a limited number of sessions)
• Medical equipment or services not covered by your insurance
• Expenses for your support system to be with you during the transplant process
• Incidental expenses such as parking
They also want to know that you have enough financial flexibility or savings to cover the cost of your anti-rejection medications in an emergency.
Some HPS’ers who receive part of their medical coverage through public programs run the risk of disqualifying for the very coverage that will pay for their transplant if they raise money to meet these needs.
The solution is to raise money for a designated fund managed on your behalf by a non-profit or trust. This way the money is not technically yours but is managed on your behalf to pay specific transplant-related expenses.
There are a number of foundations that help transplant hopefuls raise money. They typically charge a fee for managing the funds. Some offer modest grants to help with your fundraising. However, if you do not receive a transplant, the money raised goes back to the foundation.
Because of the specific needs of HPS families, the HPS Network is trying to help HPS’ers seeking lung transplants.
The HPS Network will set up and manage a fund on your behalf for your transplant. We will set up a fundraising page online that you can circulate among your contacts (and ask them to pass it along to their contacts.) This way the funds generated do not count as income. When you need funds for a specific expense, you call the Network and let us know. You should also send the Network a receipt for that expense once you’ve paid the bill.
If you do not get a lung transplant, the funds can go to your family to help pay your final expenses, or to another family member with HPS who will also one day need a lung transplant.
To qualify, you need to actively be pursuing a lung transplant. This means your physician is referring you to a lung transplant center and you are actively taking steps to get ready for a lung transplant evaluation.
Other than providing this tool, the HPS Network cannot raise money for each individual. Its up to you and your supporters to circulate the online funding page and organize fundraisers on your behalf. It is also up to you to write thank-you notes to your donors.
Which fundraising option works best for you will depend on your needs as well as those of your loved ones.