Tagged: COVID-19, Financial Assitance, nord
- This topic has 10 replies, 4 voices, and was last updated 9 months, 3 weeks ago by Jen Cueva.
April 27, 2020 at 3:13 pm #24819
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S.. Here is link for more information. Let us know if reach out to them and what your experience was like.
NORD Opens COVID-19 Financial Aid Program for Rare Disease Community
Are there any resources you know of that can help your PH family during the COVID-19 pandemic?
April 27, 2020 at 3:20 pm #24820
Thanks, @colleensteele. I have shared this with Shannon and others who are not members. This is a fantastic support to not only those within the PH communities but all of the rare disease communities.
So many have been affected by COVID-19. I am sure that many will benefit from this fund. Do y’all know of any other financial assistance programs that may be within your local community?
I shared a few weeks back, a link to PHA, and their financial assistance links. In my local area, the food banks and churches have been showing long lines, but so many people benefit from the food programs that they offer.
Have y’all experienced any of these financial assistance funds during COVID-19? If so, were you in long lines or on hold via phone to get access to the support?
April 28, 2020 at 5:01 pm #24871V.R. PetersonParticipant
This isn’t specific to COVID-19, but Pulmonary Hypertension Association has a site with many of the organizations that provide financial help for PH patients. There is both medical and non-medical help available.
April 28, 2020 at 7:09 pm #24873
Thank you @mamabear007. It’s helpful to have various sources on hand to turn to for assistance. I hope our members who need it can find the help that they need.
April 29, 2020 at 8:52 am #24881
Thanks, @mamabear007. I love the financial resource page at PHA. I shared this several weeks ago, as I thought many are unaware of these resources. I often share this list with my PHriends who are having difficulties trying to pay for the expensive medications. It is also a helpful resource when one is going through a rough patch and needs a little extra help,
Which medications were your son on? He had PTE surgery, correct? Sorry, I have such a difficult time remembering everyone’s information. I know that all of them are quite costly.
April 29, 2020 at 9:26 am #24884V.R. PetersonParticipant
@jenc, yes, my son had PTE surgery. Before surgery, he was on Remodulin SQ, Opsumit, Adempas, and oxygen. Immediately after surgery (even before he woke up) they stopped all medications. Three months after surgery, he stopped daytime O2, and by 6 months he was 100% off oxygen. About a year after surgery, his doctor put him on Sildenafil, but that has fewer side effects than the other.
Don’t worry about not remembering everybody’s information. Too many people and too much information for one person to remember. 🙂
April 29, 2020 at 3:50 pm #24893
Hi @mamabear007, wowzers, I know that was an expensive treatment plan. It sounds like the surgery helped him immediately. That is awesome.
Revatio(sildenafil) is one with fewer side effects for most, I agree. I am grateful that he continues to do well on this and after his PTE surgery.
Thanks for being so kind. I try to remember as much as possible. Some days, that just isn’t happening-Hehe.
I hope that you are taking care of yourself this week.
April 30, 2020 at 10:03 am #24913Cris DingmanParticipant
I don’t know if it has already been mentioned, but Patient Assistance Foundation is another group that works with many rare disease medications. The pulmonary hypertension helps always seems to be closed when I look, but many other conditions are listed on the site. Check it out.
April 30, 2020 at 3:37 pm #24918
Thanks @crisincincy! I’m not sure if it was mentioned before but it never hurts to repeat important information such as this. It is appreciated!
May 1, 2020 at 9:20 am #24925
Thanks, @crisincincy, I have heard of that program. I’m guessing that they only have a small budget, or maybe they cannot keep up with requests. I had heard several years ago that they stopped with the copay assistance program for PH. I’m not sure if that’s still the case. You could always email or call them.
Another is the PAN PROGRAM, , which is for Medicare recipients. A PHriend just told me that she received a visa card to help with costs due to COVID. It is for other essentials besides medications.
August 12, 2022 at 12:09 pm #35547
I wanted to add this link so others can see it if they have not been to PHA’s website before. They do offer various financial resources. Of course, under the Treating PH sub-forum, you will find the pharmaceutical company copay assistance information for many PH treatments.
6 Sources of Financial Assistance
If you have used or heard of any other financial assistance programs, please share here or, if treatment specific, under that treatment topic. I often hear about programs and want to share them in case others could find them helpful.
- You must be logged in to reply to this topic.