Mended Hearts Open Forum

Hi everyone!

Marcia and I attended a round table discussion today that focused on sustainable solutions to healthcare.

I wonder: other than the obvious cost of healthcare, have you experienced any barriers to accessing the care you (or a loved one) needs? 


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Andrea Baer
Grapeville PA
(724) 396-7820
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Andrea

Two and half years ago when I needed an aortic valve replacement, I had to jump through multiple hoops to get approved for the TAVR (rather than a very risky sternotomy)  It took over a month to get approval for what was clearly the best solution, and a very workable solution.  It's a mooter point now relative to TAVR, but the issue of access to latest technology and meds being tied up in the FDA bureaucracy, and in insurance company approvals (and thus an issue of cost), is often so frustrating and a barrier to access,

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Larry Haffner
Larryhaffner@gmail.com
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Thank you both for the replies. Larry: I do think that access to innovative treatments and devices is vital. And this is something that we are trying to find ways to improve. 

As far as rural areas such as New Mexico....that really is an issue in a lot of states. The fact that there are great facilities and they are sometimes so far away that it seems impossible to get to. 

Thanks for the feedback. We are trying to work on incorporating our advocacy efforts towards finding ways to reduce barriers and improve access to healthcare for everyone 


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Andrea Baer
Grapeville PA
(724) 396-7820
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Original Message:
Sent: 02-25-2017 10:37
From: Lawrence Haffner
Subject: Question about Access

Andrea

Two and half years ago when I needed an aortic valve replacement, I had to jump through multiple hoops to get approved for the TAVR (rather than a very risky sternotomy)  It took over a month to get approval for what was clearly the best solution, and a very workable solution.  It's a mooter point now relative to TAVR, but the issue of access to latest technology and meds being tied up in the FDA bureaucracy, and in insurance company approvals (and thus an issue of cost), is often so frustrating and a barrier to access,

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Larry Haffner
Larryhaffner@gmail.com
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Hi Andrea, thanks for the question.  As far as NM is concerned, there are state-wide rural disparities that serve as barriers to receive care.  The "ruralness" of the state makes it difficult to recruit providers that will stay in the long term.  In terms of what this means for the patient - barriers to accessibility (traveling hours for any specialist care), availability (disruptions in continuity of care), and affordability.  If the patient isn't equipped to advocate for themselves, then there are likely to be issues with health outcomes.  Hope this helps in some way.  

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Arlene Britt
Santa Fe NM
(575) 602-3569
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We have been crazied about this! With our children being so young. I first found out about being pregnant no more than a month after being off of my parent's insurance, we were fortunate enough to get approved and covered by Medi-cal In california. The only time we've needed government assistance. It was a hassle then and a huge hassle to get off of it and moving to back to fresno, trying to switch up to Fresno County. With my husband's job he doesn't benefits so we bought into Kaiser, we were members in southern cal and liked their system and access. We have had headache after headache with the Covered California system and the fact that no system communicates with each other was a nightmare we are still dealing with now since July '16... The main thing i am concerned about for my kids is the pre-existing conditions, I know that has been done away with-i believe-but it still worries me the next guy in office can screw that over and my kids won't have coverage or we will pay a much higher premium.

A few moms have expressed their concern for transfer of care from Peds to adult medicine. Some of the kiddos and families i am getting to know, they are medically fragile and very complex, and their parent's are very concerned there isn't an adult doctor able to care for their child. Since there's no in between doctor's for them, it's concerning. I can see where they are coming from. I also am a little nervous when they turn 16 and i am not allowed in the room to discuss their treatment or procedures, i know there is the wavier they can sign, however, that's so young even 18 is young to make a huge decision for themselves. I believe with our kiddos, some more than others, there is a ton of things they may know but not understand, that may need a longer time frame for their parent's to be in on the decision. 

as for their pacemakers, i know they are advancing rapidly and will soon sit inside their hearts, plus battery life is improving drastically. We actually have the inside scoop into Medtronic, my brother in law is a research and development for valves. So we have a lot of knowledge and support as of that aspect. But still worrisome. I just worry for my babies, since they will need a pacer and batteries for as long as they live. :) 

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Lydia Howard
Clovis CA
(559) 917-2843
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Thank you for sharing your story. I appreciate it. I'm really working hard to make sure that we draft our priorities and focus on the important issues surrounding access. This kind of information helps me out when I look at different policy issues arise. 


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Andrea Baer
Grapeville PA
(724) 396-7820
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Original Message:
Sent: 02-26-2017 22:50
From: Lydia Howard
Subject: Question about Access

We have been crazied about this! With our children being so young. I first found out about being pregnant no more than a month after being off of my parent's insurance, we were fortunate enough to get approved and covered by Medi-cal In california. The only time we've needed government assistance. It was a hassle then and a huge hassle to get off of it and moving to back to fresno, trying to switch up to Fresno County. With my husband's job he doesn't benefits so we bought into Kaiser, we were members in southern cal and liked their system and access. We have had headache after headache with the Covered California system and the fact that no system communicates with each other was a nightmare we are still dealing with now since July '16... The main thing i am concerned about for my kids is the pre-existing conditions, I know that has been done away with-i believe-but it still worries me the next guy in office can screw that over and my kids won't have coverage or we will pay a much higher premium.

A few moms have expressed their concern for transfer of care from Peds to adult medicine. Some of the kiddos and families i am getting to know, they are medically fragile and very complex, and their parent's are very concerned there isn't an adult doctor able to care for their child. Since there's no in between doctor's for them, it's concerning. I can see where they are coming from. I also am a little nervous when they turn 16 and i am not allowed in the room to discuss their treatment or procedures, i know there is the wavier they can sign, however, that's so young even 18 is young to make a huge decision for themselves. I believe with our kiddos, some more than others, there is a ton of things they may know but not understand, that may need a longer time frame for their parent's to be in on the decision. 

as for their pacemakers, i know they are advancing rapidly and will soon sit inside their hearts, plus battery life is improving drastically. We actually have the inside scoop into Medtronic, my brother in law is a research and development for valves. So we have a lot of knowledge and support as of that aspect. But still worrisome. I just worry for my babies, since they will need a pacer and batteries for as long as they live. :) 

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Lydia Howard
Clovis CA
(559) 917-2843
------------------------------

Wow. It seems like you have been through a lot in the insurance system there in California. When our daughter was born there, my husband was active duty Marine Corps. I came late in my pregnancy, after the doctor's told the military I could not leave where we were, and we had a difficult time finding an OB to take me. Long story short after finding an OB who thought she walked on water, I ended up being rushed from Orange County down to Balboa in San Diego, my husband taking me in by wheel chair and I don't remember much from that night due to eclampsia... 
We have fun into issues on the East coast in regards to transferring of insurance, who pays for what, what falls under what and so forth. Having things kicked back is frustrating and beyond what words can express when all you want to do is care for your child. 
Different states have different rules. For instance, in the state of Pennsylvania at age 13 my child can make it that I have no input in regards to certain medical conditions, opinions and medications. I am lucky and my children looked at the nursing personnel like they had two heads when it was explained to them. Even my son who recently turned 19 has given me full power of attorney over him. We found that even if I called in to refill a medication, try and handle a medical bill and so forth I was told he's over the age of 18 we can no longer talk to you, unless he's present and says so. So, we fixed that issue with the power of attorney. Not sure how that would work in other's states but I know in our state it trumps anything else. 

We learned after our 3rd child was born to not take the offer of medical assistance, even if we qualified because she's as born premature. It then became a war between my husband's health insurance and welfare whom paid what. I spent more time fighting them than my child received treatment! 

I hope that others can learn from our trials and tribulations and if anyone ever needs a sounding board to vent and just talk I'm here. I know in my life I only have my husband to speak with or my parents in regards to what my child(ren) are going through. No one else understands and when you try and explain heart issues to them boys do they clam up FAST!

Good luck!!!!

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Teddy
Mom to 4, one of which has a repaired right coronary artery w/intramural course.
Hollidaysburg, PA
------------------------------

Original Message:
Sent: 02-26-2017 22:50
From: Lydia Howard
Subject: Question about Access

We have been crazied about this! With our children being so young. I first found out about being pregnant no more than a month after being off of my parent's insurance, we were fortunate enough to get approved and covered by Medi-cal In california. The only time we've needed government assistance. It was a hassle then and a huge hassle to get off of it and moving to back to fresno, trying to switch up to Fresno County. With my husband's job he doesn't benefits so we bought into Kaiser, we were members in southern cal and liked their system and access. We have had headache after headache with the Covered California system and the fact that no system communicates with each other was a nightmare we are still dealing with now since July '16... The main thing i am concerned about for my kids is the pre-existing conditions, I know that has been done away with-i believe-but it still worries me the next guy in office can screw that over and my kids won't have coverage or we will pay a much higher premium.

A few moms have expressed their concern for transfer of care from Peds to adult medicine. Some of the kiddos and families i am getting to know, they are medically fragile and very complex, and their parent's are very concerned there isn't an adult doctor able to care for their child. Since there's no in between doctor's for them, it's concerning. I can see where they are coming from. I also am a little nervous when they turn 16 and i am not allowed in the room to discuss their treatment or procedures, i know there is the wavier they can sign, however, that's so young even 18 is young to make a huge decision for themselves. I believe with our kiddos, some more than others, there is a ton of things they may know but not understand, that may need a longer time frame for their parent's to be in on the decision. 

as for their pacemakers, i know they are advancing rapidly and will soon sit inside their hearts, plus battery life is improving drastically. We actually have the inside scoop into Medtronic, my brother in law is a research and development for valves. So we have a lot of knowledge and support as of that aspect. But still worrisome. I just worry for my babies, since they will need a pacer and batteries for as long as they live. :) 

------------------------------
Lydia Howard
Clovis CA
(559) 917-2843
------------------------------