Begin 2018 hebben we deze onderstaande correspondentie gehad:
(Schuin gedrukt is Loukisha!)
Happy New Year Bart. Thank you for the well wishes for me and my family. I hope that you and your family are happy and healthy in 2018.
Sure, I switched to Health Net, and so far that are very courteous, the policy covers all my Specialists, it is a real PPO and has a smaller out of pocket ( me ordering one of my HAE medications will take care of the out of pocket cost for the year) all the UCLA and UCDS hospitals are covered (they are hospitals that are not intimidated to treat me during HAE attacks). However it is insanely expensive and without PSI I could not afford it. Last year my insurance costed $643.73 a month. This year it is $955.02 and it only covers me!
ufaa...., what a difference! Is this because of the change of Obama care? (I heard something that Mr. Trump would like to change a lot what Mr. Obama had built-up, isn´t it?)
Actually this is a combination of not denying pre-existing conditions, not enough paying into the system, people could not afford insurance, also tax penalties was cheaper than buying insurance. All of the above is the affordable healthcare act, set by the prior administration, the current only got rid of the mandate of insurance. Nothing else is done due to all the fighting among the political parties. with the ACA my premiums have gone up considerably every year. In 3 yrs it has doubled! Insurance companies are pulling out of the individual market place, and if the current one leaves I'll be without insurance. Without PSI I would be without insurance, for government insurance doesn't cover my HAE medications, or HAE specialist.
Here's something else to shock your mind. In 2 yrs my old insurance company paid out $12,000,000.00 for me.
Oh my God...., this is extra ordinary high amount
But since you are using the RUCONEST medication, it´s still that high amount? What I heard is that RUCONEST now is used Profylaxis although the FDA has to aprove it. I think it was because of the shortage of Cinryze, I´m right? Pharming did finish their clinical studies and sent all data to the FDA late November last year. I believe there will be change one thing only after aproval of the FDA..., Pharming can make advertisement for the RUCONEST. Correct me if I´m wrong!
Those sums included all HAE medications, infusion supplies, hospitalizations, regular doctors, Specialists, tests, scans etc.
This year I'll be able to see how much Ruconest cost with the new insurance. Hopefully I will not require extended ICU stays, and I won't be ordering a lot of other HAE medications. So that will make the amount of money be less. Due to the Cinryze shortage it did help Ruconest to be used as prophylactic care, and hopefully fast track the FDA process, to get this made permanently. I pretty sure once all that is done, Pharming will be able to advertise Ruconest to be used as a prophylactic treatment. Will you still recommend the use of Ruconest for acute treatment too?
I would like to advice you that your specialist doctor get in touch directly with the specialist at Pharming to give a correct answer to your question.
Anyway I hope for you and other patients as well that the RUCONEST will avoid the maximum possible so that you rather don´t need acute treatment anymore. God bless you!
Bye the way..., thank you very much for your open story! I would like to see more people to do so! Have a nice evening!
Thanks Bart, I'll ask Dr. Riedl the next time I see him. My hope is I will not need acute treatments too. Thank you for the encouragement concerning my FB page. It was a big step of faith to be so open about HAE and how my family and I live with it. So far it has been a very positive experience, and being able to help others in the HAE community has been a HUGE bonus. In me taking this risk, I hope that others will be encouraged to be open and honest about their lives with HAE and the therapies they use as treatments. Be safe, and be well.
Wellicht dat de twijfelaars betreffende Pharming en haar RUCONEST dit bovenstaande aan het denken zet.
PS: mijn positie is altijd al op Long Term (LT) basis geweest en als ik over de financiele middelen zou beschikken zou ik mijn pakket nog eens flink uitbreiden!