Keep in mind that 50% of all CF patients are ABOVE the age of 18. That’s a good thing but it has created new problems that many of us face.
Based on the earlier post, “The Other Half of the Battle”…specifically, Insurability, Affordability, Employability, many patients who are 18 and older are well enough to work but find employment difficult, if not impossible. Those 26 and older are potentially uninsurable. Some don’t qualify for SSI or SSDI but cannot afford insurance, etc.
The other argument is that employment doesn’t always solve affordability issues and there are few CF-friendly businesses willing to hire CF patients. There are many bad scenarios as shared on this forum. Heartbreaking stories.
For that growing number of adult CF patients, faced with these issues, know that the Cystic Fibrosis Foundation hears us and is working on solutions in 2015, even on state levels. So for starters, please contact the CFF office in your state for updates. The state ED (Executive Director) is typically privy to projects in motion and might provided some information that will help you. To be fair, they may only be able to express so much, given that some programs have not officially rolled out. Keep that in mind and be kind!
And don’t stop there. Your voice counts more than you think. If you have an idea, email the foundation here: ideas@cff.org. Don’t be shy. Let them know your situation and offer solutions. Keep it positive! Don’t gripe. You may or may not get a response but don’t be offended and don’t give up. They hear you. The more patients and families reach out, the more results we will see.
But what types of ideas? For example, what if there was an employment resource where CF patients can seek employment opportunities from CF-friendly businesses? Or perhaps we should declare that Cystic Fibrosis is in fact a disability because quite frankly, it is! We should lobby and petition hard for this. Ask why this hasn’t happen, and then offer why it should happen. Patients are in desperate need of SSDI assistance. There are so many other ideas so share yours with us!
CFF has done an outstanding job with research and treatment. No doubt about that. Patients are living long and that’s a good problem to have. So now the foundation is working on the “other half of the battle”. We are very grateful for that. But get involved. Never feel like you don’t matter.
In the interim, given all the changes and confusion taking place with ACA, as well accessibility to medications and accessing SSI and SSDI, PARC is your best bet for starters. Patient Assistance Resource Center (PARC) at 1-888-315-4154 Monday through Friday from 8:30 a.m. until 5:30 p.m. ET or by email at parc@cff.org. They are wonderful people and will try to find solutions for you, even if they are sometimes outside the scope of PARC.
Everyone has a unique situation. Many are complex. The bottom line is that we all need support to survive life beyond the disease. Some patient and families have sought their solutions but there are still many other adult patients who are trapped, worried and confused. Reach out! There are so many wonderful ideas and information out there about employment, discrimination, disability, affordability. We all need to share our ideas, concerns and needs to CFF and other CF-related organizations. These are powerful organizations that can make it happen at the highest levels.
Also, post your ideas here on this forum. Start the conversation! Get people thinking. Use keyword “IDEA” or “IDEAS” in your title for better search. Perhaps this forum might even create a section for ideas and solutions!
Together, with CFF we can make life easier and survivable, beyond CF itself! Let’s go!
Based on the earlier post, “The Other Half of the Battle”…specifically, Insurability, Affordability, Employability, many patients who are 18 and older are well enough to work but find employment difficult, if not impossible. Those 26 and older are potentially uninsurable. Some don’t qualify for SSI or SSDI but cannot afford insurance, etc.
The other argument is that employment doesn’t always solve affordability issues and there are few CF-friendly businesses willing to hire CF patients. There are many bad scenarios as shared on this forum. Heartbreaking stories.
For that growing number of adult CF patients, faced with these issues, know that the Cystic Fibrosis Foundation hears us and is working on solutions in 2015, even on state levels. So for starters, please contact the CFF office in your state for updates. The state ED (Executive Director) is typically privy to projects in motion and might provided some information that will help you. To be fair, they may only be able to express so much, given that some programs have not officially rolled out. Keep that in mind and be kind!
And don’t stop there. Your voice counts more than you think. If you have an idea, email the foundation here: ideas@cff.org. Don’t be shy. Let them know your situation and offer solutions. Keep it positive! Don’t gripe. You may or may not get a response but don’t be offended and don’t give up. They hear you. The more patients and families reach out, the more results we will see.
But what types of ideas? For example, what if there was an employment resource where CF patients can seek employment opportunities from CF-friendly businesses? Or perhaps we should declare that Cystic Fibrosis is in fact a disability because quite frankly, it is! We should lobby and petition hard for this. Ask why this hasn’t happen, and then offer why it should happen. Patients are in desperate need of SSDI assistance. There are so many other ideas so share yours with us!
CFF has done an outstanding job with research and treatment. No doubt about that. Patients are living long and that’s a good problem to have. So now the foundation is working on the “other half of the battle”. We are very grateful for that. But get involved. Never feel like you don’t matter.
In the interim, given all the changes and confusion taking place with ACA, as well accessibility to medications and accessing SSI and SSDI, PARC is your best bet for starters. Patient Assistance Resource Center (PARC) at 1-888-315-4154 Monday through Friday from 8:30 a.m. until 5:30 p.m. ET or by email at parc@cff.org. They are wonderful people and will try to find solutions for you, even if they are sometimes outside the scope of PARC.
Everyone has a unique situation. Many are complex. The bottom line is that we all need support to survive life beyond the disease. Some patient and families have sought their solutions but there are still many other adult patients who are trapped, worried and confused. Reach out! There are so many wonderful ideas and information out there about employment, discrimination, disability, affordability. We all need to share our ideas, concerns and needs to CFF and other CF-related organizations. These are powerful organizations that can make it happen at the highest levels.
Also, post your ideas here on this forum. Start the conversation! Get people thinking. Use keyword “IDEA” or “IDEAS” in your title for better search. Perhaps this forum might even create a section for ideas and solutions!
Together, with CFF we can make life easier and survivable, beyond CF itself! Let’s go!