Update: Bone marrow specimens sent and examined at new specialist's w/o my knowledge - now charged $400.....need advice!

[Lucy2022]

Hi everyone, I thought I'd share an update to the situation I described below, as it could be helpful for others. I appreciate everyone who responded and their advice - it was very helpful for me!

A general note: This whole situation with Johns Hopkins could have been avoided if they had communicated their usual procedures when I was making a new patient appointment. I feel very strongly about patient rights, patient-centered care, and informed decision-making/consent, which is a big reason why I pushed so hard for what I believed was right.

Since talking to various people in Johns Hopkins billing wasn't going anywhere, I did start a written email record with both financial services and patient relations.

I didn't get anywhere saying that I did not consent/wasn't informed/didn't sign any documents about my original slides/records being sent. I was told that "per JHH bylaws, slides from previous biopsy must be reviewed by JHH Pathologist" and "it doesn't require my permission since it is medical protocol."

I didn't accept this response. Just because they argued that it was their bylaw/medical protocol, it is ultimate a "service" provided, as it is something we (patients) end up paying for either ourselves or through insurance (that we also pay for).

I did some research on my own and got a hold of John's Hopkins Patient Rights and Responsibilities document. There were several items outlined on this document that may have helped argue my case:

Under "Respectful and safe care", number 13 says: "You or your designee have the right to receive information about hospital and physician charges."

Number 14 under "Respectful and safe care" says: "You or your designee have the right to ask for an estimate of hospital charges before care is provided."

I emphasized in all emails that I did not receive any information about this service/charge occurring. I also emphasized that I did not have the opportunity to ask for an estimate of the charge before the service was provided.

My case went under department leadership for another review/resolution. I ended up getting a letter in the mail from the director of pathology apologizing for the situation, explaining why they review original pathology slides (there's a small number of patients where they render a different diagnosis), and that he would get the entire charge waived.

A couple final items of interest:

-My original MPN specialist in Seattle and another medical facility that I'm in process of making an MPN appointment with have said that you have to sign a release of medical information so they can get the records/slides. I don't understand how/why Johns Hopkins can bypass this?? For those of you who have had new patient pathology slide reviews, did you have to sign a release of information?

-Also, when Johns Hopkins sent the claim to my insurance, my insurance originally rejected the entire claim. Johns Hopkins sent the claim a second time, my insurance then covered some of the claim. I had heard about how insurance companies may reject claims the first time but then when you send it again they'll cover some/all of the claim. Seems like this may have been that scenario - just sharing in case any of you have claims rejected - maybe try submitting them again!

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Original situation:

Hi all, appreciate any advice you can give about my situation below. Thanks in advance!

I recently moved far away from my original MPN specialist and scheduled an appointment with a new MPN specialist at Johns Hopkins. I have my first appointment at the end of October. However, I already have a bill for $400!

According to Hopkins billing, Hopkins pathology did a second opinion consult on my bone marrow biopsy specimens. I was never informed about this. I talked to my original MPN specialist - who I haven't seen in over 1.5 years - and they did not ask for this consult.

When I looked at the Hopkins pathology test result, it says the new MPN specialist ordered this. I would not have agreed to this testing if I had been informed about it.

According to my original MPN specialist, they should not have done any sort of testing without me actually meeting with the doctor and giving my permission.

Wondering if you all can help with some questions:

- Has anyone else had something like this happen at Hopkins or another facility? What did you do?

-Is this common practice for when you change care to another facility? As in the new MPN specialist will test/reevaluate your specimens before you have an appointment with them?

- Any tips on how to get this bill removed from my account? I'm currently battling billing about this charge, and it's not easy.

As a side note, the entire process to become a new patient at Johns Hopkins has been disorganized and an overall headache. I'm going to be finding someone else at another organization to serve as my doctor.

[DougyW]

That's US law so can't really help but could you appeal the bill as you didn't agree it.

[Lucy2022 in reply to DougyW]

thanks for your thoughts! I already appealed and it didn’t work unfortunately…

[strangeland in reply to Lucy2022]

I've been to two different MPN specialists at Hopkins and neither charged for anything before I saw them, and I had a previous BMB in my chart. I suggest you keep complaining to billing that it was an unauthorized charge and take it up with the doctor when you get there.

Also, I suggest you make sure you know where to park and how to get to your doctor when you get there--that place is a maze!

[Lucy2022 in reply to strangeland]

Thank you!

[Doxy46]

Talk to the hospital's patient advocate. If that doesn't work, contact the medical director's office. Billing probably doesn't have the authority to remove the charge.

I was scratched by a wild kitten once and needed rabies shots. The ER doc said my GP could do them. Since I didn't have a GP at the time, the ER doc said they could do them in an area next to the ER. Much to my surprise I received a big bill for the shots. I didn't have insurance. I complained that I was never told about the extra cost beforehand. My complaint made it to the hospital's medical director's office who reduced the bill significantly.

[Lucy2022 in reply to Doxy46]

Wow! Glad you're okay and that you got the bill taken care of.

Thanks for the advice!

[George1976]

In my experience it’s fairly standard for a new MPN specialist to do that. They want to check to see if they agree with your diagnoses and otherwise understand your situation.

Having said that, Johns Hopkins is definitely not the place it used to be just 5 years ago. Used to be a MPN specialist named Jerry Spivack who was very caring and willing to answer as many questions as you might have. New people aren’t quite accessible as he was but still provide good care in my experience. It’s fine if you have no issues and your tests are stable and you feel good.

The billing operation there is a total mess. You have to stay on them and be aware of every detail including what your insurance says about the charges.

One warning about patient services. If you complain to them about billing that’s probably ok - medically. If you complain about a doctor there’s a chance your docs and others in that office will not be very kind to you and you’ll have to find a whole new practice.

[Lucy2022 in reply to George1976]

Thanks for the tips and insight! Yes, I've heard about Jerry Spivack and have watched some of his presentations. Wish he could have been my doctor!

[hunter5582]

Sorry to hear about the negative experience at Johns Hopkins. I see several specialists there. My care experience has been excellent. The only glitch I encountered is when my last MPN Specialist left and I was reassigned without being consulted about the new provider. I objected and arranged to be assigned to a provider of my choice.

The hospital has reorganized the hematology department. There is no longer a MPN Clinic as such. Their structure is now a "Hematological Malignancies" division. The hematologists in this branch of the hospital may or may not be a MPN Specialist. You would need to check the qualifications of the specific provider to determine whether they have the expertise you need. If you came to Johns Hopkins from outside the system, you likely went through a "concierge" who processed your case. These administrative staff would assign you into an open slot with someone in the correct department but I would not expect them to find a MPN Specialist. You would need to specify the name of the provider you wished to see. Suggest you check the background of the provider you are assigned to see to determine whether they have the needed expertise.

Regarding the unexpected bill, this is unacceptable at several levels. While it is understandable that a new provider would want their own pathologist to review the BMB if possible, this should not be done without your consent. In fact, the original provider who had the sample could not release a sample without your consent. That would be a violation of HIPAA and other confidentiality regulations. Suggest you read the fine print of the releases you signed. You may find some details in the documents that you were not aware of.

It sounds like you are being billed the full amount for the pathology second opinion. A $400 bill does not sound like an insurance copay for this service. Suggest you check the bill to see whether insurance was billed. I sometimes get a bill for a full amount for a service when it is hung up in insurance processing. Note that one insurance code number incorrect means the bill will not be paid. This happens on a regular basis. It is worth checking on that before taking further action.

Your billing complaint needs to be documented. You can Contact Billing Customer Service in writing at [e-mail] .

You can also file a complaint online at hopkinsmedicine.org/patient...

If you have a patient complaint or question about Johns Hopkins Hospital, you can also contact the Johns Hopkins Health System legal department at 410-955-2273. They can give the contact information to file your complaint in writing.

I would use all three avenues to move your complaint forward in the system. It is worth doing. Even the best facilities make mistakes. Problems in healthcare systems will get ignored if no one complains when there are issues.

Wishing you success moving forward.

[Lucy2022 in reply to hunter5582]

Thanks so much for your response and for sharing the resources. This is incredibly helpful and has helped me figure out a path forward.

I'm glad you've had a different experience with Johns Hopkins. As a new patient, it's been one issue after another. And yes, I had to really stand up for myself to make an appointment with a specific MPN specialist (Dr. Jain) I sought out as opposed to who hematology wanted to assign me. It's unfortunate that potentially good doctors are in these messy systems!

[hunter5582 in reply to Lucy2022]

Dr Jain is who I see. She is a great hematologist, with Ruben Mesa as a mentor. She is very patient-centered in her perspective. I hope you het the issues with Johns Hopkins worked out so you can see her.

[Lucy2022 in reply to hunter5582]

Thank you!

[Meatloaf9]

Hi, when I was referred to Cleveland Clinic for a second opinion my slides were also sent ahead of my visit to the MPN Specialist and he also had them read for a second opinion on the pathology report by a staff oncologist.

I guess I was lucky in that my Medicare and Medicare supplement completely covered the charges, I think they were also about 400.00.

There may be a law that says the hospital has to inform you if they use outside providers for tests or other consults that may not accept your insurance, I am not sure but have heard something along that line. You might ask the billing department at your local hospital how they handle such situations.

Best to you in sorting out this problem.

[Beachbud]

Hi, what was the outcome of Hopkins' billing you for the pathologist you didn't consent to?

[Lucy2022 in reply to Beachbud]

Hi! I just updated the original post with the update. Hope that helps!

[Beachbud]

Thank you for sharing all the details. I'm glad to hear that Hopkins waived the charge, but what an ordeal for you!

Yes, most of this could be avoided if Hopkins would better communicate with new patients. Unfortunately, communication continues to be a weak point, per my current experience. I wish I'd seen your post earlier ( I was dx with ET in Dec 2024).

Recently I set up a new patient telehealth appointment with Dr. Jain for late March. I requested and authorized my local hematologist to send my records to Hopkins Heme-Oncology Department. My BMB slides are at an external lab and I didn't think the lab would be involved as my hematologist has all the BMB reports. However, I just discovered (per Hopkins patient portal) that a Hopkins' pathologist reviewed my slides. I had no knowledge Hopkins wanted or would seek slides at this point, and as such, I hadn't provided any authority to do so. Much to my surprise, Hopkins sought the slides from the external lab. I've not been billed yet, but I expect I will be.

The lab didn't have my consent/authority to send slides or reports to a third party and that issue likely deserves a separate post. But back to Hopkins... when I pursued more info from the lab as to how Hopkins had the authority to obtain my slides, they only reported that the form Hopkins sent was from Dr Jain, as the authorizing physician, seeking my slides for "continuity of care." After I spoke with the lab, they contacted Hopkins and reported back to me that it all comes down to Dr. Jain. The lab gave me Dr. Jain's direct phone number to speak with her about it. So I'm to go toe-to-toe with Dr. Jain on this matter? Perhaps a rough start for a new patient.

[Lucy2022 in reply to Beachbud]

Gosh, sorry you've had a rough introduction to Hopkins as well. Maybe you can file a concern/complaint about the situation? Patient Relations could be the place to do it, or they could direct you on who to contact. Here's their email: [e-mail] .

Do you know if you authorized just the electronic records with your original doctor? My original specialist told me that there should have been a separate medical release of information for me to sign (through Hopkins) to get my BMB slides. I had also called and authorized my original provider to send the electronic records to Hopkins to be able to make the original appointment. The legalities of all of this is very confusing!

[Beachbud in reply to Lucy2022]

Thanks again for your reply! And the Patient Relations contact info!

Hopkins specifically instructed me to have my local hematologist fax them my records, so there was no electronic/digital access. Plus, my local hematologist doesn't have my slides, so I never thought Hopkins would have access to them. But Hopkins went directly to the external lab that has my slides. After long discussions with the lab, they explained to me that they released my slides (8 of them) to Hopkins without any consent from me (hence, I never got to have a say). The lab said Hopkins commonly asks for patients slides, and the " go around" is for the purpose of patient care. If it was for research purposes , the lab would need my consent. But get this ---once Hopkins (or any institution for that matter) has our slides, they don't need our consent to use them for research if they say they're de-identified. Can our slides be totally de-identified in this age of identity theft? (I don't know; I haven't thought it thru). But you're right, the legalities (and more) are confusing!

[Lucy2022 in reply to Beachbud]

Wow! Thanks for this additional information. It's helpful to hear from a pathology lab.

I hope you're able to get everything sorted!

[PupsBestFriends]

Glad you've resolved this charge. Your situation sounds like it may have been covered under the No Surprises Act that went into effect in 2022 in the USA. It helps prevent surprise medical bills, and requires a cost estimate be provided before services.

Last year I filed a complaint under this act for a surprise bill I received for $500 after a heart monitor was used. The charge was eventually dropped. Link below has info about rights under this act if needed:

cms.gov/medical-bill-rights

[Lucy2022 in reply to PupsBestFriends]

Thanks so much for sharing this info! That's great the bill was able to help you out.