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What Are Your Options If You Don’t Have Health Insurance?
A PH diagnosis is scary, but it can be even more frightening without health insurance. Have you been in this situation or know someone who has?
A new member, @kakes from Texas, is trying to find help for her recently diagnosed sister. She was sent home with medication but no further options because she does not have health insurance.
What would you do if you didn’t have health insurance or suddenly lost it?
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49 Replies
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Hi @kakes, again, my heart goes out to you and your family. This has to be overwhelming, stressful, and frightening.
Have y’all checked with local, state, and federal programs? What area are you in, Texas? I was in the Houston area before relocating last year. But know, Methodist Hospital and other large hospitals in Texas take patients without insurance.
Most all PH treatments offer copay assistance, too. Please let us know how we can best support you through this difficult time.
Is there a case manager or social service worker who can help? There are resources out there. Unfortunately, they aren’t easily accessible.
Here are a few links that you may find helpful.
Healthcare.gov-
Hi Jen, yes we have check into our states insurance but basically you have to have a child or be 65 years and older, she does not have kids and she is 34 years of age. She Has PAH with a hole in her heart, leaky valve, enlarge right side. she is in heart failure. I have to help her. Its hard bc I have 4 small kids and I’m a single mother and I also take care of her. My soul is crushed and my hurt is deep. I have to help her. we are from Houston but live in El Paso Texas. I have no where to turn I feel as if they sent her home to die. I want to thank all of you on here because of you I have strength to pull myself together and find joy in my day.
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Hi @kakes, if she is on limited or no income, she should qualify for something locally or federally. It breaks my heart to hear that she has been “sent home to die,” as you mention. Did they send her home with hospice care, then?
I found these online that may offer some local assistance programs for you both.
It is great to hear that you find this forum a place that offers you strength. I imagine this is challenging to balance with caring for three kinds and scary, to say the least, for you. You’re such a wonderful sister.
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Thank you Jen so Much. I’m so Happy I found this place. all of you have giving me so much stuff to read and go over and apply for from the bottom of my heart THANK YOU ALL.
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Hi @kakes, I hope and pray some other help is approved for your sister. I’m grateful for the help of the medications. Which medication is she on for PH?
As far as diet, most PH doctors recommend a heart health low-sodium diet. Check out this topic for more information. I will also tag you in a post about yoga and exercise.
The El Paso resources seem to offer many free mental health clinics. Is that where you applied for therapy for her?
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@kakes, Please reach out to me anytime! I have PAH, which is what your sister has, as well as heart failure. PH is a little different that PAH. I struggled mentally and very afraid. I needed therapy and couldn’t afford it. Opsumit is one of the leading prescriptions for PAH. It would cost me over $100k per year! I pay zero! It sounds like your sister would qualify! It has improved my PAH and heart failure! Please let me know if you want more information. Ours if different from PH. I was scared to death! I’m not now!
Thanks! ????????????????????????????????
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Hi @kakes I had a Christian sharing program when I was diagnosed. Unfortunately they did not cover my medications, so I had to get insurance because my doctor had informed me my medications would be extremely expensive. I was able to get Blue Cross Blue Shield not during open enrollment because of some government policy that had been passed. It is not cheap though. If your sister’s income falls within the guidelines, several of the PH medications have assistance with them.
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Thanks, @debbie, for sharing your experiences when you were first diagnosed. I’m sure that @kakes will appreciate everyone’s support at such a frightening and overwhelming time as she helps her sister navigate this season.
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Miss Debbie Thank you for sharing with me your personal story. I hope things have gotten a little easier for you. Your an amazing person remember that. thank once again Debbie
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Hi, when my mom got diagnosed with PH in 2015 she had no insurance and was just visiting me from India. The hospital social service worker helped me with a lot of resources and also got oxygen supply for a low price. Also they set us up with a doctor for just 50 dollar copay. We were in NJ then and moved to Texas but still she had no insurance but I reached out to the financial depth and social workers and got a lot help. As I was paying out of pocket everything was much lesser. We now buy insurance and everything is good but I know it is not easy. Reach out to the Social Workers and you will get good resource and help for sure. Also you may qualify for many medications if you reach out to the companies with you financial status.
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Hi @icepick7500, thanks so much for sharing your experiences when your mom was diagnosed. What area are you all located in, Texas? Maybe that matters. When I was a patient at Houston Methodist, I know most hospitals have financial assistance for all types of cases. Sadly, this is not so easily accessible; we have to ask and deep dig and find the right people. But social workers and the billing departments at the medical facilities are usually where this would begin.
I’m so happy to hear that things worked out pretty well amid an overwhelming time with your mom. Thanks for sharing with @kakes. How are you and your family doing now, Jay?
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Jay, Thank you I’ve got in touch with a social worker. THANK YOU
I feel a lot better now that I’ve obtained a social worker. Wow you have no idea the relief I feel having a SW.
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I don’t know what medications your sister is on but reach out to the pharmacuetical companies, and the specialty pharmacies. I was underinsured when I was first diagnosed and they pharmacuetical companies were willing to help me, and that is how I was able to get my medications before I had insurance. Also reach out to the local hospital where your sister received treatment, to see if they have a program to assist with medical bills.
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Hi @sarahbeth31819, yeah, so many neglects to learn about the pharmaceutical companies’ copay assistance finds. Again, this isn’t always shared unless asked, and often usually, larger PH Centers do work well to help their patients with any financial aid they are aware of.
@kakes, if you know which medications she needs help with paying for, you can also search it under the Treating PH section. I had shared several when I asked if others have experience with specific treatments. Then the PHA treatment and insurance resources I shared at the beginning of this topic, my first response also offers a ton of links, too. Is her medication coming from Accredo, by chance? They are also excellent at helping with Copay assistance funds.
Caring voices and many other nonprofits also offer assistance, and few were offering help with insurance and medicare copays at one time, pre-COVID. I’m uncertain how much they are back to the offering, but happy to check into it once you tell us more about what type of help is needed.
This is a ton of information. Your brain is probably on overload. Take time this holiday weekend to take a break and start fresh on Tuesday morning. Your sister is fortunate to have you on her side. Take care of yourself, too.
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Jen, Yes I have applied for all of the insurance she qualifies for with the help of the links you have sent, I just need to wait to see if she gets approved. fingers are crossed. She has her meds I found Project Vida that offers a program she qualifies for and they give her amazing prices on her medication. We just need help in general. I want to take her to therapy to help with her mental state and the knowing that her life is uncertain. I’ve found a program for that hopefully it goes through and soon.
Does anyone have and ideas about things I can do at home to help her? what’s the best diet for her? What are hearth healthy. yoga?
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Hello Kali,
My heart breaks for you and your sister.
This forum has been a God sent for so many and I know you have received a great many links to help your sister. Another grant that has helped me is The Assistance Fund. I have to apply each year but they have come through for me.
You asked what you can do to help your sister at home with diet etc. Certainly Heart Health diet is the number one the medical field recommends. Also, when I was first diagnosed 18 years ago by 2 different Pulmonologists they told me excessive really would not help WRONG!
When I found the right team I was told that excessive is not only good but will help. The hospital where your Pulmonologist is probably has a heart/Pulmonary rehab. If your sister has to pay for that service she could ask her doctor to lay out an easy exercise for her.
I was also told by those 1st two I only had 3-5 years to live – WRONG – that was 18 years ago and I still have many more years to look forward to. Don’t let your sister or yourself give up.
What is also very important is you taking time to take care of yourself – that is so important for a caregiver. Please make sure you take time for yourself.
Sending loving hugs and positive energy.
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Sorry to hear about these insurance issues. I certainly hope it works out well for you.
I don’t want to start a political discussion, but only want to tell that in Norway we (PH patients) don’t have to deal with insurance companies as Norway has a universal health care system. This means that all PH mediation is covered. (We pay a deductible of maximum 200 dollars yearly. This means that any medication, doctor’s visit, operations, etc which amounts to more than this, is free of charge.)
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Hi @hall-skara, no political discussion from me. But I am impressed with many health coverages that many other countries offer. That $200 max deductible would be fine with me. Now, are your treatment options limited? I know for some time in Canada, PH patients would not be approved for more than one PH treatment. Again, I do not want a political stir but rather an education on my part. I’m unfamiliar with the terms of health coverage rules for PH patients in Norway.
How have you been? Thanks for sharing your experience. I could only hope my max deductible was a total of $200 per year. That’s more like some max copays for me.
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No, we don’t have any treatment limitation in Norway when it comes to treatment of PH patients. If triple PH treatment is required, then triple treatment is given.
However, sometimes generic variants are given if they are considered to be equal to the original medication. (E.g. Sildenafil)
I am fine, thank you. Looking forward to my upcoming trip to the States for the PH conference.
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That’s awesome, @hall-skara, that a person with PH has access to triple therapy if needed there in Norway.
I wasn’t able to make the PH Conference this year. Hopefully, you’ll share a recap once you’re back home and rested. Are you speaking this year, by chance?
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No, not speaking. I proposed to run a presentation on rehab or my personal survival guide, but I was too late. Program had already been set.
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Hi @hall-skara, I hope you made it home from the PHA Conference and had a great time. I hate I missed this year but hoping to be in Indianapolis in 2024!
Hopefully, you are home and resting now. Once you’re relaxed, please share a little about your experience.
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@kakes, Pulmonary Hypertension Association has a list of many charitable programs, some government, some non-profit: https://phassociation.org/help
Once your sister knows which medications she’ll be taking, be sure to check out the programs offered by the pharmaceutical companies (also listed on the link above).
I wish you and your sister much help and luck.
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Thanks, @mamabear007, for sharing another link from PHA with @kakes. I shared a few and know they offer many resources. I know that Kali and her sister will appreciate all of the resources shared by our supportive members.
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Hi @leverettsherrylgmail-com, because you didn’t have insurance when you were diagnosed, would you mind sharing some of your experience with @kakes for her sister? I think your story will offer hope for them as they are having such a difficult time with no insurance.
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Hi Kali,
Don’t give up hope! I know it can devastating to learn of a progressive disease. Luckily, for me, I have a Pulmonologist in the Atlanta area that is one of the best in the southeast. I got lucky.
My story: I have IPAH, Idiopathic, so they don’t know the cause and right side heart failure, too.
I wasn’t feeling well and went to an Urgent Care close to home because I didn’t have health insurance. I was between jobs and thought about taking a few months off. They diagnosed me with pneumonia and did a chest x-ray. They found I had an enlarged heart with fluid around it. So, I went to a hospital and they wouldn’t touch me because they didn’t have the experience dealing with a pericardial effusion ( fluid around the heart). So, they transported me to a hospital right down the road from where I live. At Piedmont hospital, they ran test and discovered my IPAH and heart failure. Luckily, my Pulmonologist is one of the best in the Southeast. He wanted to take my case because IPAH is rare.
After draining the pericardial effusion, I had the right sided heart catherization. My hospital bill was insane. Around $100k. I am single and had no income coming in, so the hospital wrote off 100% of the bill. I had to fill out paperwork and show my bank information, and living expenses.
My doctors only charged me 30% of the normal price to see them. Find a great Pulmonologist that will work for you and with you! Mine got me on Opsumit and it has helped me tremendously. I couldn’t afford it so he got me on a program with the pharmaceutical company . They did all the paperwork for me. The second year, I had to go through their patient assistance program and I filled out all the paperwork and was approved again. I pay $0.00 because I’m not married and had no income.
A year or so later, my pericardial effusion came back and I had to have a pericardial window put in the sac of my heart to drain the fluid into my stomach. My hospital bill again, I paid $0.00, through their patient assistance program. With both hospital stays and surgeries, it was well over $200k, or more.
I filed for disability with an attorney and was approved. It took me over two years, but I got it. I was approved for another year through Patient Assistance for Opsumit. I’m been on Opsumit for almost 4 years now.
I’m single, so I don’t have anyone else’s income to consider. I have a boyfriend, but his income does not count.
There are many programs and trials available to you. You need to ask your Pulmonologist for assistance. If he/she doesn’t know, find a new doctor!
I hope this is helpful. Please let me know if you have any questions. I don’t know your marital status or work status, but hopefully this is helpful.
Thanks,
Sherryl
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Also, my cardiologist did not work with me like my pulmonologist did. Keep looking!
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I didn’t mention the mental health aspect of this illness. It’s very draining! Don’t believe everything you Google. It’s usually worst case scenario. My boyfriend’s father is a doctor and did his residency at the Mayo Clinic. He’s the one who told me that! I haven’t seen a therapist, but I needed to see one very badly! People have lived up to 20 years with this disease. So, don’t give up hope!
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I didn’t mention the mental health aspect of this illness. It’s very draining! Don’t believe everything you Google. It’s usually worst case scenario. My boyfriend’s father is a doctor and did his residency at the Mayo Clinic. He’s the one who told me that! I haven’t seen a therapist, but I needed to see one very badly! People have lived up to 20 years with this , so don’t give up hope!
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You are all so amazing. I’ve been away for a few days and return to all of this kind and helpful responses to @kakes situation. Thank you for always being there for each other whether it’s for a long-time forum member or a new one!
@kakes I read that you have a social worker now. I am so happy to hear that! Please keep us updated and we encourage you to ask questions so we can offer support and advice based on personal experience.
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@kakes I received a message from a woman who says she is a research nurse in PH. A doctor she works with read a thread about your sister’s predicament. They work in Texas and believe they can help your sister get access to care without insurance. In case you are interested, I will direct message you her contact information. Let me know if you receive it ok. If you do contact her let us know if she offered you any hope.
Everyone, it will be wonderful if this person can help @kakes but always proceed with caution when someone you don’t know offers assistance. I’m hoping for the best with this contact!
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Hi @kakes, I wanted to check on you and see how you are doing with balancing all on your plate. How are things going?
How can we best support you at this time? You are not alone, and I’m keeping you, your kids, and your sister in my prayers. Take care of yourself, too.
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Hey y’all, I want to share an update from @kakes. I heard from her today and actually had a nice phone call with her this afternoon. She has been busy as you can imagine taking care of 4 kids, working, and taking care of her sister, with PH.
She sounds hopeful and is very much appreciative of all of your support here. Although I know she is eager to get some help for her sister, she is exhausted but pushes through.
Here is a little of her update:“The medication she is taking 1. Sildenafil (heart ❤ and lung)
2. Clonazepam 3. Naltrexone 4. Mirtazapine
5. Diclofenac 6. Pantoprazole 7. Bupropion
8. Propranolol.So a little back story my sister Kesia was diagnosed on April 4th, 2022 with. She had become short of breath walking short distances, legs and feet started to swell her tummy was swollen and bloated, she looked pale and sick but when she told me her jaw hurt I knew at that moment it was her heart and I knew it was not good but never did I think she had this many complicating health issues because up until the moment you told me her jaw hurt she was healthy to me she looked healthy. She was the most amazing long distance Runner all throughout High School, she entered in triathlons in El Paso California Santa Fe New Mexico. She trained well she did great. When she heard this she didn’t understand what it meant. I think she had a feeling it was something bad so she was in denial.
Since then she’s educated herself. It’s hard for her. They’ll be moments when we’re together I still feel like I can never do that again for the rest of my life it’ll hit her. Those are the most devastating moments. I was so desperate to find any glimmer of hope if not for her for myself. I could have never imagined getting on a forms website would have so much support and caring people behind it. Thank you so much for all of this. I had emailed it Jordan the nurse but I had my mom do it because I was slammed with kids and taking care of my sister and work. So it didn’t come from my email. Every day that went by I was a little more devastated not hearing from her. But now I know there’s some kind of mishap in the spelling or maybe you shouldn’t recognize the email address.
So I wrote her another email and I put my name and my sister’s name as a subject line. I called the phone number today I left Miss Jordan and message and I look forward to hearing from her. It would bring so much hope you just hear her and what she has to say and how they can help my sister”
@jordinr, let me know if you need their contact info, and I’m happy to email you so you can connect with them and see how you can help. Thanks so much for wanting to help.
She also says if anyone wants to send an encouraging note to her sister, Kesia, her sister would love that. I emailed her and asked if she wanted to join the forums.
Please, LMK, if you want to send her encouraging words of hope, I can send them in a group email with a ton of your words that may help uplift her spirits as she is awaiting help. I think that would be the safest way to share some encouragement with her if she doesn’t feel like joining. Thoughts?
Kali, you and your family are in my thoughts and prayers. It was my pleasure to speak with you today and learn a little more about you and your family. Don’t forget to take that “me” time when you can.
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@kakes I’m keeping my fingers crossed that @jordinr will be able to offer hope to you and your sister. The both of you remain in my thoughts and prayers.
@jenc you can pass on the following message:
Kesia, a PH diagnosis can be overwhelming and life-changing. If you are feeling discouraged and down, you are not alone. It is common and understandable to feel that way, especially when you are first diagnosed. It’s important to allow yourself time grieve because it is a type of grieving process. Your life has changed but I pray that like so many others in the PH community, you will find a way to embrace the changes and find joy in life again. May you find new activities and hobbies that make you happy and find comfort knowing that there are people like your sister who love you and will be there for you no matter what. The PH community will welcome you with open arms should you decide to join the PH News Forums. I will keep you in my prayers. -
Hi @colleensteele, your heartfelt words will mean so much to Kali’s sister, I’m sure. Thanks, and I will forward this to her. Please let us know if anyone else had any encouraging words to send her.
The PH nurse @jordinr was out of the country and was planning to connect with them this week. I’ll keep y’all posted as I learn more. Of course, @kakes is welcome to share anytime, too.
Kali and her family appreciate the love and support from our forum members. Thanks to you all.
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Hi, y’all, I heard from @kakes yesterday, and she said I could share a little update on her sister, Kesia. They had a virtual visit with Dr. Sahay in Houston already. Unfortunately, Kesia had been in the local hospital and was told her pressures were 70.
Thanks to @jordinr for her dedication and passion for wanting to help Kesia and others in the PH community. You’re a star! I know she will be in excellent hands there.
“We’re doing okay we leave for Houston on the 16th she has an appointment at Methodist hospital with Dr shahey at 8:45 in the morning she has a stress test and then an MRI and then she’s going to be admitted into the hospital there and Dr shahe will put her on medication and try a few days with them and see how she does. So updates is so so I just wish she wasn’t in such severe hypertension it would make it a lot easier but I’m hopeful that she will be okay”
Kali, we are thinking of y’all and praying for a safe and much needed help on your trip to Houston. Please let us know how things go when you can. Take care of yourself, too.
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Wishing you the best! Happy to help. Dr. Sahay is an excellent resource and help to patients. Take care on your trip to Houston.
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@jenc thank you so much for this update on Kesia!
She has a lot of phighting to do but thank God she has the help now to do it! Keeping her, @kakes and @hussbutton in my thoughts and prayers!
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I heard from @kakes late last night with a brief update. She wanted to let me know that he sister, Kesia, and her mom, Faith, @hussbutton, drove to Houston. They had to be there at 8:45 today to see Dr. Sahay. Their family is very thankful for the forums and Dr. Sahay’s office and will update me once she can. Faith will be too busy focusing on Kesia and what the PH team is educating and telling them.
Thinking of and praying for their family today and this week as they see what options may be best to treat Kesia. @kakes was excited but home with her kids while her mom was away with her sister, Kesia.
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Sending lots of prayers and thoughts of hope for all of you, Kesia, @kakes and @hussbutton!
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My heart is overjoyed to share this update. Many of you will want to see it as you’ve had this family in your thoughts and prayers. I heard from Mrs. Faith @hussbutton. Kesia is on Opsumit and Orenitram and doing well with only a few side effects, mainly a headache that they are giving her medications as needed to help relieve.
Mrs. Faith and Kesia are still in Houston under the care of Dr. Sahay. The family is “thankful beyond measure” for his team and the forums.
They are being discharged to go home tomorrow. Mrs. Faith says, ” other than the headache, Kesia feels great and breathing beautifully.”
I was in tears and had chills as I read this update this morning. So grateful for @kakes for joining the forums and wanting to help her sister. I know she and the rest of the family will be excited to see Kesia feel better when she returns home. Look at what can happen with help from others and share our experiences. A special thanks to @jordinr and her willingness to help the family.
This is what life is about, helping others through their most challenging times. Every one of you makes a difference every day!
My thoughts and prayers for safe travels are with Mrs. Faith and Kesia as they head home tomorrow. Please let us know how things are going once you get home. Mrs. Faith, I’m happy to help you with learning about the forums once y’all get settled, and you have time. Just let me know. We would also love to have Kesia join when she is ready.
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My heart is bursting with happiness for Kesia and her family, @hussbutton, @kakes. My heart is also full of joy when I think of the love and support our forum members have offered this family and the above and beyond that Dr. Sahay and @jordinr have gone to basically save a life!
I’m looking forward to reading more happy updates like this one! Sending all my love, hope and prayers to the family!
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update: Kesia is doing amazing. She’s back to her old self and cracking jokes about the hospital stay and the amazing doctors and nurses she got to meet and speak to. She has some funny stories about how the doctors and nurses went above and beyond to put a smile on her face. They ran a lot of test and I know it had to be hard for her. She was quite grumpy at times, my mother shared with me. Dr Sahay and his team where so amazing to her even through her grumpiness was apparent but after she was giving the Opsumit, my mother said 30 after taking the medication she had the blinds open did a little make-up took and 2 miles walk. It was night and day difference in her, I cried when I heard her voice again. she had lost her voice over the last 3 months she was sick without treatment so to hear it again was so emotionally exciting I was screaming ” It all started with the forms ” We feel like bursting with excitement and thank yous for everyone that’s shared they’re story and posted weblinks and prayed for us. we couldn’t have do it without you all. Jen had asked for pictures I’ll post some here in a minute. THANK YOU ALL
I’ll update soon
Kakes
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Hi @kakes, thanks so much for your uplifting update on your sister, Kesia. It was such a pleasure to speak with you both over the weekend. My heart is overflowing with joy for you and your family.
You took that first step by joining the forums and sharing Kesia’s story whole, asking for help. That’s a sister bond that I adore.
I’m very grateful that Kesia had the opportunity to see Dr. Sahay and his team. He is a lifesaver and offers so much to the PH community. As y’all know, we are always here for you, Keisa, and Mrs.Faith, @hussbutton. This is why we share our stories and experiences to inspire hope in others and PHight.
Your thanks and talking to y’all and knowing that Kesia is feeling much better and responding well to the Opsumit. I’ll have a special connection with my EP PHam.
Take care of yourself, Kali, and enjoy time with your baby girl when school begins. My positive thoughts and prayers are with y’all and for Kesia to continue to respond so well to her treatment.
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P.S. Kesia is ready to get on the forms I’m making her an account..
YAY Kesia
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Yay, Kesia, we are here when you’re ready! Thankful for the special sister bond between you and Kali. I admire you both.
Together you can do anything!
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Hey, y’all, I wanted to check in and see how Kesia and her family are doing as well as everyone. Unfortunately, @kakes informed me last week that Kesia had to be admitted into the local hospital, ughh. Thankfully it was only a few days, and she was discharged over the weekend. She was treated for pneumonia with IV antibiotics. I hated that her PH team could not treat her, but that’s such a long drive for them.
Hey Kali, how’s Keisa doing this week? Is she back to herself again? How are you doing? Are you taking time for yourself, too? How is mom @hussbutton feeling after this recent hospitalization of Kesia?
We are thinking of y’all and sending y’all extra love, hugs, prayers, and positive thoughts as we know this can be frustrating when she is doing so well on the treatments after seeing Dr. Sahay. Please let us know how we can best support y’all at this time.
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@kakes @hussbutton oh no, I’m upset to hear about the pneumonia. I do hope Kesia did a quick turn around and is feeling better again. Those bumps in the road can feel very unsettling. How are you all doing now?
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Hey @kakes and @hussbutton, It’s been quite some time since we’ve connected, and my attempts to reach you have been unsuccessful. I was wondering how you all are, especially our girl, Kesia. Have you changed your numbers?
You’ve been in my thoughts, and I wanted to check in, assuring you that we’re here to support your family as you navigate the challenges brought on by PH.
If you see this, please send us an update here or to my email, [email protected]
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