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  • We need better access to care…

    Posted by Elena Rich on February 14, 2024 at 5:02 pm


    I looked for a place to comment on your article and didn’t see one so I brought it here. I really appreciated your article today.

    I am 51 years old, single and raising a 15 year old on my own. I was diagnosed with severe PAH in March of 2017 and have been on IV Remodulin (life saving medication) since April of 2019.

    Although I have Health Insurance through my employer, it is very expensive and costs thousands and thousands of dollars each year. I am so lucky that I am healthy enough to work full time and maintain a part time job along with a small side business. However, I live in constant fear of losing my job and/or my disease progressing without a health insurance safety net.

    I’m not complaining but working three jobs with Pulmonary Hypertension is a constant challenge. I only do it so that I can try to be debt free with my medical bills. Financing them year over year is not sustainable. You reach a point where the deductible & yearly maximum out of pocket are so expensive, you have to bring in more money and keep current on your bills. It is suffocating. I am a hostage at my job because of my health insurance. I live in a constant state of flight, fight or freeze because of my constant worry.

    Even with private insurance, I am constantly jumping through hoops trying to leverage what my policy will approve with co pay cards and outside funding. I have my Dr. writing new prescriptions every year when our insurance changes. Our health insurance at work is always changing because the company is chasing the least expensive comparable policy to the previous year. This year, it appears that my co pay card benefits are being applied differently to my policy. Although I am grateful for the co pay assistance, it looks like the Health Insurance company has found a loop hole to essentially double dip. It appears as if they are spreading out the co pay card benefit out over the year instead of applying the full benefit at the beginning of the year. I have reached out to the insurance company about it but have yet to receive the full details on the payments are being applied.

    It is terrifying to think about the future. What is going to happen if I lose my job? Cobra is not even an option due to the expense. Going out to the open market and trying to buy a policy through the ACA is possible but not a great option. The deductibles and maximum out of pocket expenses are almost double the cost of my current policy. The ACA policies have very strict formularies which often make specialty meds like IV Remodulin, Adcira & Letairis very difficult to obtain.

    Thinking about what will happen when my disease progresses is another big worry. I have no idea what will happen then. If I can’t work, I can’t afford insurance. Will I be forced to live in poverty so that I can have insurance provided through the state? I honestly don’t know what that landscape will look like. It’s too scary to think about right now.

    Thank you for your article today. You were spot on in so many regards. I appreciated seeing my thoughts & worries articulated in writing and knowing that others share my thoughts on healthcare in America along with my very real concerns brings me some comfort.

    –Elena Rich

    Elena Rich replied 4 months, 3 weeks ago 7 Members · 18 Replies
  • 18 Replies
  • jen-cueva

    February 15, 2024 at 12:25 pm

    Hi, @Elena Rich; first off, I would like to thank you for taking the time to read my column and sharing your feedback.

    I’ll share that column here so others know your comments. Also, if you scroll down to the bottom after it shows my Bio and pic, you should see the comment section. I’ll share my image below.


    Wow, I didn’t realize you worked three jobs, Elena. How do you manage? This has to take a toll. But I can also understand your fears and uncertainty about the future. I am fortunate enough to be on my hubby’s insurance, and like you, I often fight with the insurance company over my coverage. And yes, it may change each year as they look for the best deal, not usually the best for us.

    You are not alone in your fears and worries about the future. These added worries and stresses can negatively impact our physical and mental health. I appreciate that you took the time not only to read but also to share your thoughts. It makes me grateful to know that my column was beneficial to you.

    Take care of yourself, my dear PHriend!

  • Elena Rich

    February 15, 2024 at 3:07 pm

    Hi Jen, I actually found the comment section when I went back to the article.

    Thank you again!

    • jen-cueva

      February 16, 2024 at 11:00 am

      Hi, @Elena Rich, there is no need to apologize. I wanted to ensure there was no issue with finding that comment section. I appreciate you letting me know you could locate that section to share your thoughts.

      Have a wonderful weekend!

  • Karen Endelman

    February 15, 2024 at 4:37 pm

    I share many of the same concerns and worries about the future. Luckily, I have a job that pays me well and I am able to work from home. I work as a contractor and am fortunate that the company I contract through pays a third of my insurance and they take out the insurance that I pay before taxes so it saves me a little there. Still, I do pay thousands (many) over the course of the year. One of my concerns is when I start using Medicare (in a year and a half) whether or not they will cover my specialty meds and how much they will cover. As you all know, the price on those are ridiculous!

    I also wonder how I will take care of myself as time and this disease progresses. I live alone with no family near by, and don’t have any children.

    There are so many things to worry about that I sometimes find I just shut down and end up isolating myself from the outside world because I feel like everything is overwhelming. But, I was raised to be strong and even though I may sometimes go down a dark hole, I allow myself time to be there and then force myself to climb out. I just find that, since my diagnosis, I slip down that hole a lot easier and more often.

    Thanks for sharing you thoughts and feelings – it helps me to do the same.

    • jen-cueva

      February 16, 2024 at 11:11 am

      Hi, @Karen Endelman. I’m happy to hear that you can work from home and that this works well for you now. But you’re right, the future is scary! We begin to think about how fast we will progress, etc.

      Of course, you worry more since you live alone. I know many strong-willed warriors who carry this heavy load on your shoulders. I hope you have some friends or someone near to help support you.

      I am married, and my hubby still works. I worry about when he will retire and think about our insurance then. Like you, I can spiral out of control and become so overwhelmed that I shut down. I hibernate, as I call it. But we must learn how much to stay in these moments and experience and feel these emotions, which is frightening at times. But by not acknowledging these fears and feelings, we harm ourselves.

      Thanks so much, Karen, for sharing your thoughts after reading my column and others’ replies. Enjoy a lovely weekend!

  • Barbara Thompson

    February 15, 2024 at 6:51 pm

    Have you applied for any of the grants available or the drug manufacturer?nI feel sure that you have but thought I would check.

    • Elena Rich

      February 16, 2024 at 5:18 am

      Yes, and I’m so grateful for the funding. I have copay cards for my IV Remodulin as well as funding through The Assistance Fund for my two generic oral meds!

      • jen-cueva

        February 16, 2024 at 11:16 am

        Hi, @Elena Rich. It’s such a blessing when we can find copay assistance or grants to help cover our expensive treatments. Without starting a soapbox, we all know the cost of almost everything we need has skyrocketed.

    • jen-cueva

      February 16, 2024 at 11:14 am

      Thanks, @Barbara Thompson, for the reminders about the copay assistance grants, etc. They seem to be opening up more this year than in the last few years. Have you noticed any with more open spots and accepting more patients?

      • Elena Rich

        February 17, 2024 at 6:05 am

        I was able to get funding through The Assistance Fund https://tafcares.org/ this year when I haven’t been able to in the past. If the window is closed or there is no funding available now, get on the waiting list. That is how I got my funding for this year and this funding helps cover the copays of my generic specialty meds that do not offer a manufacturers co pay card.

      • jen-cueva

        February 20, 2024 at 1:47 pm

        Hi, @Elena Rich; thanks for sharing your positive experience with The Assistance Fund(TAF). I know a few others also receive financial assistance from them. It’s good to know that you can add yourself to their waiting list.

  • Jane Armstrong

    February 20, 2024 at 2:47 pm

    As someone who has been on Medicare for many years, I just want to say that things are much better there. This year the maximum co-pay is $8,000. I know that seems like way to much but here is the good news, next year the max amount is $2,000. That will be all that someone on Medicare Part D will have to pay out of pocket. These changes were made in the Anti-Inflation Act, I believe. My only concern is the up coming election. A different administration may think that was not a good change. This is one of those places where it is important to be on the original Medicare rather than Medicare Advantage plans. Hope that is some hope.

    • jen-cueva

      February 21, 2024 at 2:05 pm

      Hi, @Jane Armstrong; it’s wonderful to hear about the positive changes you’ve experienced with Medicare. But yes, it is frustrating to know that depending on the political status affects our healthcare. Even if some, like myself, are not yet on Medicare, knowing these little efforts in the right direction is hopeful.

      Some commercial insurance max out-of-pocket that I’ve read and heard about go upwards of $ 10,000! That’s ridiculous; I’m so thankful your Medicare is not as high and will drop again next year. (let’s hope) Mine this year is max out-of-pocket at $2000. But my husband pays a good chunk, and the company pays the same.

      Thanks for taking the time to share your experiences. How are you managing lately?

  • Randolph Reynolds

    February 20, 2024 at 5:19 pm

    I am without words to offer advice to you. The costs of managining PAH is extrodinarly high. It is my good fortune that I am fully covered by a combination of Medicare and TriCare for Life. The latter is a benefit from retiring from the Air Force.

    Had I developed this disease before i retired it is not clear to me just what the process would have been. If I had to work in my current health situation it would be a struggle. I ache for you. Something good must come your way. I send you blessings Elena.

    • jen-cueva

      February 21, 2024 at 2:21 pm

      Hi, @Randolph Reynolds; I am so thankful you have such good coverage as you should after many years of dedication to our USAF. It’s the least we can do – you sacrificed so much for those years to protect us. You should be treated like a King!👑

      But I’ve also heard of some who have not had such a positive experience with TriCare. It makes me smile knowing you have had a positive experience and covered for life.

      Your thoughtful words to @Elena Rich make my heart all warm and fuzzy. It’s incredible to witness such empathy. Thank you, Randy; our forum members are so caring and supportive. What a huge blessing!

    • Elena Rich

      February 22, 2024 at 3:23 pm

      Thank you for the kind words, Randolph. It means a lot to me. I wish you well and send the whole community positive energy & thoughts.

  • Sarah Beth Shingler

    February 21, 2024 at 8:16 pm

    This March, I have been fighting PAH for 5 years, I have watched my savings account be wiped out. I am a case manager at a domestic violence/rape crisis center, so I have to use the ACA Marketplace; because I live in WV, I have two options as far as insurance companies go, and one of the companies doesn’t allow me to leave the state, and there are no PAH Clinics in WV. I have to take the gold plan, my maximum out of pocket expense is $7,500. Which thankfully I have no problem meeting because of IV Remodulin, and then I get copay assistance through United Therapeutics.

    My problem is the staggering costs of the medications for PAH; it is CRAZY how expensive they are; these drugs are only symptom managing, and none of them cure PAH. So many patients with PAH are struggling to manage to pay for their medications and it is a crime. We don’t have a choice we either take the medication or we die…unfortunately that is the cold hard reality. I did the math from me alone and my Remodulin prescription United Therapeutics makes $240,00 a year. In 2016, Remodulin was number 2, and Tyvaso was number 3, in the most expensive drugs billed to Medicare per patient expense and both drugs are manufactured by United Therapeutics. I have tried to find out how much it costs to manufacture PAH medications but can’t seem to locate it, so I could see revenue versus cost of medication etc. And United Therapeutics is fighting to keep the drug manufactured by Liquidia from coming to the market.

  • Elena Rich

    February 22, 2024 at 3:22 pm

    United Theraputics has been generous, it’s co pay card has helped me out a lot over the past 5 years but it is really hard to put into perspective that these are not non profit companies. It makes sense that they would try to block competitors, looking at it from the business side of things. The free market at work often comes at the expense of the patient. The safety nets that are in place are not sufficient and are designed to keep the sick living in poverty.

    Sarah, I searched through the ACA Marketplace policies in the Cleveland area before I left my old job that provided my health insurance. There wasn’t one policy that covered all three of my medications and deductibles & maximum out of pocket expenses were almost $12,000 combined. That didn’t include the monthly policy premium which was over $1000 a month.

    I am pleased to see so many of us communicating about the issue. It’s nice to know that I’m not alone. It would be nice to think that something will change for the better for us. I know I’m beating a dead horse but to think that our insurance is tied to our employer is just something that I still can’t digest. The whole system is terribly broken. I know healthy people who have good insurance and do not think the system is broken. Unfortunately, that is only because they have been granted a pass (so far) on the financial devastation that a chronic illness can inflict. My own family doesn’t understand the financial strain that this puts on me so I understand why others might not understand.

    I am very grateful for this community…


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