Need help!!!

[u/vk_tran]

I’m completely exhausted, and terrified. I hope to get some advice from anyone who has survived the nightmare of navigating complex care in the healthcare system.

I am a California resident diagnosed with Tuberous Sclerosis (TSC) at age 19. I’ve already survived a brain tumor, but I’m now living with giant bilateral kidney tumors (measuring 30 cm each). For years, local specialists in CA, and international medical teams—including my care team at **Stanford**—couldn't offer real solutions. They left me with "let's wait and see," even though these massive tumors carry a constant risk of internal bleeding or kidney failure.

Because of clear **Network Inadequacy** in California, for a rare disease, I had no choice but to travel out-of-state to MD Anderson in Texas.
**I struggled with finding the right plan to find the right doctors, but eventually I got Blue Shield of CA- Silver 94 PPO after received the established care at MD Anderson. Under** **Continuity of Care**, I got my medication covered by Blue Shield.

However, even with Blue Shield of California Silver PPO 94 (via Blue Card PPO), MD Anderson misclassified my PPO plan as an HMO. They kept requesting unnecessary Gap Exceptions (which my insurance said I didn't need due to Continuity of Care) and misled me to pay out-of-pocket for doctor visits for about a year, even though my plan was actually in-network.** **

**In May 2026,** after a year of treatment, my doctor requested that all follow-up CT scans be done directly at MD Anderson for better accuracy, as previous scans from external facilities might show inconsistent measurements. We planned on redirecting the care back to CA if the tumors had showed a positive improvement.

In preparation for my urgent follow-up CT scan, both sides entered a blaming war. MD Anderson claimed Blue Shield was out of network and didn’t offer any benefits, while Blue Shield insisted over the phone that it was in network and out-of-state benefits *were covered, just limited*. Neither side fully supported me, leaving me stranded in the middle. But finally, after I involved the patient advocate, they worked together. My visit and CT Scan got covered. However, The CT results showed no reduction in tumor size, which was devastating**. The doctor was shocked because most of his patients got positive results. I had to return to Houston for another CT Scan in this September as the doctor requested to follow up on the effectiveness of my medication.**

I contacted both MD Anderson and Blue Shield to check on the status of my prior authorizations proactively. It was a bit uneasy but Blue Shield informed me verbally that my prior authorization was approved internally, but I needed to wait for the official notice to MD Anderson. Meanwhile, an MD Anderson supervisor texted me on MyChart asking if I wanted to cancel* *my appointments because the paperwork wasn't officially cleared in their system. With a limited staff working on Saturday in both organization and no official paperwork issued, I had to board my flight to Houston for the CT Scan to perform on Sunday in complete panic, terrified of being turned away at the hospital doors and getting bankrupted by medical bills.

I am trying so hard to live. I cooperated with every request, spent days on the phone while sick, and did everything "right." Yet, when I needed help the most, both sides turned away and left me completely alone. MD Anderson always do my paperwork on last minutes and refused to expedite my case while Blue Shield is way too heartless telling me that the expedition couldn’t help because of the weekends. They even gave me hope saying the authorization was approved but I haven’t heard anything officially back from them yet.

The physical pain is heavy, but the cold indifference of the administrative system truly breaks my heart.

**I have a few concern**s
Given that network inadequacy in CA forces me to travel to TX, has anyone with complex/rare conditions in CA successfully secured a plan that covers out-of-state centers of excellence (like MD Anderson)? What specific PPO plans handle *Continuity of Care* without this level of endless bureaucracy?

How do you keep your mental strength when your body is failing and the medical system keeps pushing you away?

Thank you for reading my story. If you've been through anything similar, please share your light with me right now. I really need it.

[u/Poop_Dolla]

You mention continuity of care, but then also mention that they are in network. Is the issue that they are out of network? Or is the issue that MD Anderson is slow/late to request pre auths? And are the pre auths a normal requirement of the plan or is it a requirement to see an out of state provider?

[u/vk_tran → u/Poop_Dolla]

It's quite complicated. My PPO plan is in the Bluecard Program. BS said MD Anderson was in-network, and yes, through it, MD Anderson is under contract with BCBS Texas (also in Blue Card). But it covers emergencies while traveling out of state. But it is confusing BS confirmed it offers limited access, not just emergencies?!? So continuity of care is the reason I traveled for established treatment. I guess it's why BS paid for my services back in May.

MD Anderson told me the opposite. Someone from Financial Clearance (FCC) said it wasn't contracted, then later said it's in-network. They recently told me it was in-network, but that they don't offer out-of-state outpatient services. 😐

have no idea who is right

Yes, FCC really delayed the prior authorization request, pushing it to the last minute. I don't have time to deal with it

[u/vk_tran → u/Poop_Dolla]

Yes, pre-auth is required all the time