Welch Company
San Francisco, CA
S U M M A R Y
DIARY: May 27, 2010 02:17 AM Thursday;
Rod Welch
Millie files claim with Kaiser to recover from UCSF medical mistakes.
1...Summary/Objective
....2...Statement of Claim
....3...Patient Status
....5...Commingling Medical Mistakes with Health Insurance Benefits
........Throws Doctor and Patient "Under the Bus"
....6...Need Immediate Treatment Suspended 30 Days CA 15-3 520
....7...Due Process Standard of Care Denied a Year
...10...Good Care Leverages Luck
........Hospice After Due Process Evaluates Evidence
...13...Stage IV 11th Relapse Strategy Treatment Targeted to Cancer
...18...Recovery Medical Mistakes Separate from Health Insurance
........Benefits
...25...What process should the Claims Resolution Board order?
...26...21 Treatments Extend Survival with Standard of Care
........2nd opinion Stritter Consulting received on 090204...
........Vaccine clinical trials - new immunotherapy programs
........Test Tissue for Most Effective Treatment
...27...Patient History UCSF Radiation Treatment Medical Mistakes...
...85...Conclusion
..............
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CONTACTS
SUBJECTS
CA 15-3 520 Kaiser Lab 100511 Cancer Marker Rises Highest Patient Hi
0803 -
0803 - ..
0804 - Summary/Objective
0805 -
080501 - Follow up ref SDS 62 0000. ref SDS 61 0000.
080502 -
080503 -
080504 -
080506 - ..
0806 -
0807 -
0808 - Background
0809 -
080901 - On 100501 1037 Millie letter to medical team confirms Kaiser's new
080902 - strategy to treat Millie's cancer with "targeted therapy." ref SDS 52
080903 - F25O Millie requests Kaiser immediately switch from Abraxane
080904 - chemotherapy that has failed, and implement Doctor Rugo's plan at UCSF
080905 - on 090616, to treat Millie with PARP that is "targeted" to Millie's
080906 - rare patient profile of "triple negative" and avoids pain and
080907 - suffering from chemotherapy side effects, and for the purpose of
080908 - recovering from UCSF medical mistakes. ref SDS 52 U47P and ref SDS 52
080909 - U49V
080911 - ..
080912 - On 100501 2017 Millie received letter from Doctor Rugo saying she will
080913 - communicate with Doctor Johnson at Kaiser on the work plan for Millie
080914 - to recover from the 11th relapse of cancer. ref SDS 53 HH4I
080916 - ..
080917 - On 100502 0140 Millie responds to Doctor Rugo's letter reporting
080918 - commitment to communicate with Doctor Johnson at Kaiser on the work
080919 - plan for Millie to recover from 11th relapse of cancer. ref SDS 54
080920 - HH4I
080922 - ..
080923 - On 100502 0140 Millie responds to Doctor Rugo's letter reporting
080924 - commitment to communicate with Doctor Johnson at Kaiser on the work
080925 - plan for Millie to recover from 11th relapse of cancer. ref SDS 54
080926 - HH4I
080928 - ..
080929 - On 100503 1522 Millie notifies medical team of difficulty using Kaiser
080930 - secure email; asks about getting treatment with Abraxane chemotherapy
080931 - scheduled for Wednesday, 100505, or switching to a "targeted" agent.
080932 - ref SDS 55 HH4I
080934 - ..
080935 - On 100503 1945 Millie receives letter from Kaiser saying to continue
080936 - with Abraxane chemotherapy for 2 more treatments, and then after 2
080937 - weeks without treatment the doctor will discuss next steps in a
080938 - meeting at Kaiser. ref SDS 56 HH4I
080940 - ..
080941 - On 100503 2338 Millie notifies medical team that Kaiser guidance will
080942 - be implemented to get 2 treatments that complete 3rd cycle of
080943 - Abraxane, ref SDS 57 HH4I,
080945 - ..
080946 - On 100504 1609 Sara, Practice Manager for Breast Care Clinic, called
080947 - to confirm Doctor Rugo plans to call Kaiser about developing a work
080948 - plan for Millie to recover from 11th relapse of cancer caused by UCSF
080949 - medical mistakes. ref SDS 58 NT5N Sara asked Millie if she has other
080950 - concerns; Millie concerned about getting response from medical team on
080951 - comparing treatment trade-offs pending for a year. ref SDS 58 FK9I
080952 - Reviewed UCSF medical mistakes, and pending issues. ref SDS 58 NT99
080953 - Sara investigating patients right to use public domain email for
080954 - expediting communications with medical team. ref SDS 58 ZV6M
080956 - ..
080957 - On 100505 0411 Millie letter to medical team on UCSF investigating
080958 - medical mistakes to expedite recovery from 11th relapse of cancer.
080959 - ref SDS 59 NT5N
080961 - ..
080962 - On 100511 0800, Millie had a blood test at Kaiser in Martinez.
080963 - ref SDS 61 AS5H
080965 - ..
080966 - On 100513 1422 called Arlette this morning to get results of the
080967 - cancer marker for Millie's blood test on 100511, because these results
080968 - are not posted on Kaiser's Knowledge Mangement system for customers.
080969 - ref SDS 61 NK7F Arlette called later with results. Millie received a
080970 - letter in the afternoon from Arlette confirming her cancer marker has
080971 - increased to an all time high, saying CA 15-3 520. ref SDS 62 IZ7N
080973 - ..
080974 - On 100527 0217 completed writing claim to Kaiser Claims Resolution
080975 - Department, asking Paula to secure immedicate treatment for Millie
080976 - with PARP or equal, because her cancer marker shows disease has
080977 - increased to the highest level in patient history, and that recovery
080978 - for Millie from medical mistakes UCSF made providing radiation
080979 - treatment on referral from Kaiser, and notifying Kaiser and UCSF that
080980 - Millie's recovery requires all reasonable and necessary efforts and
080981 - costs, and is not limited by benefits of her insurance policy, and
080982 - medicare law. ref SDS 0 IZ7N
080983 -
080984 -
080985 -
080987 - ..
0810 -
0811 -
0812 - Progress
0813 -
081301 - Millie's letter to Paula at Kaiser's Claims Resolution Dep says...
081302 -
081303 - 1. Subject: Claim Recovery Medical Mistakes Need Immediate Treatment 11th Relapse Cancer CA 15-3 520
081304 - Date: Thu, 27 May 2010 09:43:44 -0700
081318 - ..
081319 - 2. Statement of Claim
081321 - ..
081322 - I request Kaiser perform section 2 of the insurance agreement
081323 - to provide standard of care for my 11th relapse of cancer based
081324 - on best evidence for my patient profile after 9-years of
081325 - treatment for stage IV inflammatory breast cancer (IBC), and
081326 - pulmonary embolism (PE). I need immediate treatment, with PARP
081327 - or equal, as UCSF and Kaiser have agreed by letter [reported on
081328 - 090616 1245. ref SDS 33 KD6L, and confirmed in my letter the
081329 - next day on 090617 0112. ref SDS 34 VS9P], and in order to
081330 - recover from critical progression shown by my cancer marker
081331 - rising on 090511, to CA 15-3 520 [...see case study patient
081332 - history on, ref SDS 17 J13O...] and compounded by radiation
081333 - injury to my lungs, and shingles, all proximately caused by
081334 - medical mistakes getting radiation treatment from UCSF ordered
081335 - by Kaiser on referral #A0231414 dated 090202 [...and discovered
081336 - by UCSF on 090609 0900. ref SDS 29 W65W, and for which Kaiser
081337 - and UCSF are liable to hold Millie harmless from injury,
081338 - including reasonable and necessary care, and monetary damages
081339 - for expenses and pain and suffering...]. I therefore
081340 - additionally request recovery from medical mistakes separately
081341 - from my health insurance benefits [...explained below,
081342 - ref SDS 0 X545...]. Finally, I request quality care review and
081343 - report on the cause of medical mistakes in this case,
081344 - evaluation of response to notice, a mitigation plan to minimize
081345 - continuing injury [...by providing follow on treatments, listed
081346 - below, ref SDS 0 X766...], and steps implemented to avoid
081347 - recurrence.
081348 -
081349 - [On 100527 1512 asked Chris to canvas N&P for ideas to
081350 - advance Mil's claim. ref SDS 63 R44V
081352 - ..
081353 - [On 100528 0322 Millie asked Medicare to help Kaiser align
081354 - case management with Millie's entitlement to recover from
081355 - medical mistakes getting radiation treatment on referral
081356 - from Kaiser, ref SDS 64 QQ6N; and further assist Kaiser in
081357 - providing quality care required by statute, Medicare
081358 - regulations, and by Millie's contract with Kaiser for
081359 - getting standard of care, and because desire for "good
081360 - business relations" with UCSF does not excuse failure to
081361 - perform. ref SDS 64 QZ5U
081363 - ..
081364 - [On 100528 1031 Jullin notifies Millie that Medicare
081365 - received request for support, and has forwarded to Amma
081366 - manages the Kaiser HMO account for CMS. ref SDS 65 4W5F
081368 - ..
081369 - [On 100528 1031 telecon Cherry and Beth at Mecidare,
081370 - showing CMS processing Millie's request for support on her
081371 - claim against Kaiser and UCSF. ref SDS 65 4295
081378 - ..
081379 - [On 100601 0136 Millie's letter to Doctor Johnson requests
081380 - work plan to recover from injuries suffered caused by
081381 - medical mistakes getting radiation treatment from UCSF on
081382 - referral from Kaiser. ref SDS 67 1Q6P
081384 - ..
081385 - [On 100601 0830 Doctor Johnson reports Kaiser cannot
081386 - provide a work plan for Millie to recover from injuries
081387 - caused by medical mistakes getting radiation treatments
081388 - from UCSF on referral from Kaiser, because he has been
081389 - unable to communicate with UCSF by telephone or email
081390 - during the past 4-weeks, ref SDS 68 4G6G, to provide due
081391 - process for standard of care comparing tradeoffs on 20
081392 - treatments targeted to Millie's patient profile, as listed
081393 - in Millie's claim on 100527 0217, ref SDS 0 X77U, and so
081394 - that Millie can then exercise her right to choose life with
081395 - effective treatment, or give up treatment and die in
081396 - Hospice, based on best evidence.
081398 - ..
081399 - [On 100602 1046 Eileen reports that Kaiser sent a letter
081400 - denying Millie's claim; she called back an hour later and
081401 - advised that after reading Millie's claim Kaiser claim
081402 - department withdrew the denial letter, and the matter was
081403 - forwarded to Kaiser's Case Resolution Department for
081404 - processing. ref SDS 69 UN5P
081406 - ..
081407 - [On 100606 2314 Doctor Johnson reported that Doctor Rugo
081408 - has still not returned his call from Kaiser requesting
081409 - treatment plan for Millie to recover from UCSF medical
081410 - mistakes. ref SDS 71 S66O
081412 - ..
081413 - [On 100607 1021 Paula reported receiving Millie's claim
081414 - filed on 100527, and that Paula received the claim via fax
081415 - from Medicare. ref SDS 72 036C
081417 - ..
081418 - [On 100608 1521 called CMS - Cherry and Beth - to follow up
081419 - on coordinating with Kaiser to review Millie's claim.
081420 - ref SDS 73 036C
081422 - ..
081423 - [On 100609 1300 telephone conference Kaiser and CMS claim
081424 - teams, ref SDS 74 036C, discoveres nobody knows who is
081425 - assigned to process Millie's claim, ref SDS 74 GF5L, nobody
081426 - has read the claim, ref SDS 74 Q96G, Kaiser required by law
081427 - to issue a determination on Millie's claim tomorrow on
081428 - 100610. ref SDS 74 6F64
081430 - ..
081431 - [On 100609 1522 Jennifer called representing Kaiser Claims
081432 - Resolution Department and explained "issues" Kaiser plans
081433 - to determine responding to Millie's claim. ref SDS 75 NM4I
081435 - ..
081436 - [On 100609 1522 telecon with Jennifer clarified Millie
081437 - needs written medical opinion evaluating treatments and
081438 - order of use that provides a road map to the future.
081439 - ref SDS 75 XW5Q
081441 - ..
081442 - [On 100611 1521 telecon with Jennifer recommends deferring
081443 - Kaiser response to Millie's claim from 100610, to 100624
081444 - because the claim is complex, and Kaiser needs more time to
081445 - develop a comprehensive solution. ref SDS 76 FP5L
081447 - ..
081448 - [On 100611 2326 Millie receives Jennifer's letter
081449 - confirming that she got the response date extended from
081450 - 100610 to 100624. ref SDS 77 CV4O
081452 - ..
081453 - [On 100616 0832 Jennifer is working on getting Millie a
081454 - treatment option, and expects to submit a solution by
081455 - Friday, 100618. ref SDS 78 OY9N
081457 - ..
081458 - [On 100620 1112 letter to Kaiser, Medicare, and UCSF
081459 - notifies of delays communicating with medical team delays
081460 - timely treatment for Millie. ref SDS 79 L58U
081462 - ..
081463 - [On 100630 0027 letter to Kaiser, Medicare, and UCSF Millie
081464 - reports energy has improved since ending chemotherapy, and
081465 - that her blood counts are excellent, except for plateletts;
081466 - she further notifies that her cancer is worsening, based on
081467 - self-examination and doubling of cancer marker to CA 15-3
081468 - 1116, in 4 weeks without treatment, ref SDS 81 036C, and,
081469 - so Millie again requests that Kaiser hold Millie harmless
081470 - from injuries caused by UCSF medical mistakes by
081471 - implementing the UCSF work plan issued on 090616, and that
081472 - upon receipt of such notice, Millie will meet with Doctor
081473 - Johnson to implement the work plan. ref SDS 81 V89X
081475 - ..
081476 - [On 100701 0915 Millie letter to Kaiser and Medicare
081477 - explains written medical opinion, like Doctor Rugo said
081478 - UCSF prepared on 090616, provides "road map to the future"
081479 - guiding treatment for cancer as a "chronic disease," per
081480 - Kaiser's reliance on medical opinions submitted by Doctor
081481 - Benz at UCSF. ref SDS 82 Q85Y
081483 - ..
081484 - [On 100702 1424 Millie received letter from Kaiser
081485 - confirming cancer marker rises to CA 16-3 1116, and
081486 - signaling seriously deteriorating, and so needs to stawrt
081487 - treatment quickly in time to be effective. ref SDS 83 L54I
081489 - ..
081490 - [On 100710 1343 Kaiser responded to Millie's claim
081491 - characterizing complaint of medical mistakes as "concerns,"
081492 - and grievance, and refused to award recovery on grounds
081493 - that Doctor Johnson says Kaiser delayed treatment too long
081494 - for treatment to be effective. ref SDS 84 X446
081496 - ..
081497 - [On 100713 0007 responded to Kaiser's letter denying
081498 - Millie's claim requesting implementation of UCSF work plan
081499 - to hold Millie harmless from UCSF medical mistakes,
081500 - ref SDS 85 036C, request reconsideration at Kaiser, and
081501 - appeal to Medicare, ref SDS 85 J74S, on grounds that Millie
081502 - met many times with Doctor Johnson over the past year, and
081503 - Kaiser persistentlly refused to provide effective care,
081504 - causing Millie's cancer to worsen, and endangering her
081505 - life. ref SDS 85 J64Y
081507 - ..
081508 - [On 100719 0522 Millie's letter to Kaiser cited her claim
081509 - on 100527 demanding to be held harmless from UCSF medical
081510 - mistakes that occurred getting care on referral from
081511 - Kaiser. ref SDS 86 JH5Y and further at ref SDS 86 JH9U
081513 - ..
081514 - [On 100719 1312 Kaiser proposes only another meeting to
081515 - "discuss next steps," and not to implement UCSF or any
081516 - alternate work plan for Millie to recover from UCSF
081517 - medical mistakes, and ignores Kaiser's fiduciary duty
081518 - to hold Millie harmless from UCSF medical mistakes
081519 - providing care on referral from Kaiser. ref SDS 87 036C
081521 - ..
081522 - [On 100719 1413 Paula received copy of Millie's letter
081523 - to Doctor Johnson at Kaiser, ref SDS 88 E35I, and also
081524 - the doctor's letter demonstrating Kaiser's refusal to
081525 - perform, received on 100719 1312, ref SDS 87 036C, and
081526 - as a result, Paula filed another claim for Millie to
081527 - take posession of and process the claim to hold Millie
081528 - harmless from UCSF medical mistakes. ref SDS 88 4G4L
081530 - ..
081531 - [On 100730 0928 Paula called with condolences, and in shock
081532 - that Millie died so suddenly, before Paula could complete
081533 - processing Millie's claim to get prescribed treatment for
081534 - recovering from medical mistakes; Paula feels Millie
081535 - established herself as the "poster patient for getting care
081536 - to have a life worth living by treating cancer as a chronic
081537 - disease, ref SDS 89 SD9F; Paula discusses the estate filing
081538 - a claim for wrongful death. ref SDS 89 N550
081540 - ..
081541 - [On 100804 2026 Millie's family notified about Paula's call
081542 - indicating family may have claim for wrongful death.
081543 - ref SDS 90 GU3Q
081544 -
081546 - ..
081547 - 3. Patient Status
081549 - ..
081550 - I have secondary inflammatory breast cancer (IBC), which
081551 - infects the skin, and eventually migrates internally causing
081552 - death. So far all of my scans for 9 years show no internal
081553 - involvement. IBC rash started in the left breast, and over the
081554 - years spread to my arm, upper chest, abdomen, and flank, all on
081555 - the left side. Late last year on 091112, IBC spread to my
081556 - right side. Treatment since 090716, has been with
081557 - chemotherapy, which is not effective for my patient profile,
081558 - and was prescribed by Doctor Johnson, pending treatment at UCSF
081559 - with PARP, which is targeted to my cancer, and so has a better
081560 - chance to be effective.
081562 - ..
081563 - 4. Doctor Johnson, in Oncology at Kaiser in Walnut Creek, has
081564 - collaborated well with Doctor Rugo in the Breast Care Clinic at
081565 - UCSF, and Doctor Hsu in Radiation Oncology Department also at
081566 - UCSF to provide outstanding medical services, which have
081567 - sustained me through 10 relapses of cancer over the past 9
081568 - years. Doctor Johnson reported on 090213 that I am very lucky
081569 - and unique to have survived so long. ref SDS 10 NY7L
081571 - ..
081572 - 5. Commingling Medical Mistakes with Health Insurance Benefits
081573 - Throws Doctor and Patient "Under the Bus"
081575 - ..
081576 - My claim is not against health care professionals, but that
081577 - management has commingled my entitlements by processing
081578 - recovery from medical mistakes that requires reasonable and
081579 - necessary effort, as limited by my insurance policy with
081580 - Kaiser. On 090616, this issue was very simple with UCSF taking
081581 - responsibility for my cancer care. ref SDS 33 KD6L Since for
081582 - unknown reasons, UCSF quit performing on 090716, ref SDS 35
081583 - EE5W, recovery has been complicated by commingling multiple
081584 - entitlements at Kaiser, and with the result that I feel now
081585 - like I have been "thrown under the bus." I'm sure Doctor
081586 - Johnson and Doctor Rugo feel the same. They are great doctors,
081587 - not claims adjusters. Therefore the Claims Resolution
081588 - Department can help.
081589 -
081591 - ..
081592 - 6. Need Immediate Treatment Suspended 30 Days CA 15-3 520
081594 - ..
081595 - Weeks ago, on 090501, I asked the medical team to change
081596 - treatment to recover from my 11th relapse of cancer with CA
081597 - 15-3 424 at all time high in 9 years. ref SDS 52 U44V Doctor
081598 - Rugo at UCSF planned to coordinate with Doctor Johnson at
081599 - Kaiser [...also reported on 100501 2017, ref SDS 53 456L...].
081600 - Doctor Johnson then advised that changing treatment is delayed
081601 - a month until 100602 [... reported on 100503 1945. ref SDS 56
081602 - HH4I; on 090205, a 2-week delay, when the cancer marker was CA
081603 - 15-3 113, caused my cancer to get so bad that UCSF changed the
081604 - work plan to a more robust treatment, ref SDS 9 EY5F; in
081605 - February on 100218, Doctor Johnson held an emergency meeting
081606 - and changed treatment immediately with cancer marker at 426,
081607 - cited in my letter on 100503, ref SDS 57 6X7V; what then
081608 - justifies delaying treatment 4-weeks with the cancer marker
081609 - much higher at CA 15-3 520...??] I asked for a work plan to
081610 - prepare for meeting on 090601 [...see my response on 100503
081611 - 2338. ref SDS 57 6X9P...]. I have neither a prescription for
081612 - treatment nor a plan. A week or so later on 100511, my fears
081613 - of cancer spinning out of control multiplied with CA 15-3 520.
081614 - ref SDS 61 L54I [...this same scenario has occurred in
081615 - meetings and correspondence with the doctor the past year,
081616 - reported below, ref SDS 0 X67R,...] Every day, I see my IBC
081617 - getting worse, while I feel weaker. Ending life is inevitable,
081618 - but should not be aided by delaying standard of care, where
081619 - there are over 20 treatments available for recovery (see list
081620 - below para 26, ref SDS 0 X77U).
081621 -
081622 - [On 100601 0830 Doctor Johnson reports Kaiser cannot
081623 - provide a work plan for Millie to recover from injuries
081624 - caused by medical mistakes getting radiation treatments
081625 - from UCSF on referral from Kaiser, because he has been
081626 - unable to communicate with UCSF by telephone or email
081627 - during the past 4-weeks, ref SDS 68 4G6G, to provide due
081628 - process for standard of care comparing tradeoffs on 20
081629 - treatments targeted to Millie's patient profile, as listed
081630 - in Millie's claim on 100527 0217, ref SDS 0 X77U, and so
081631 - that Millie can then exercise her right to choose life with
081632 - effective treatment, or give up treatment and die in
081633 - Hospice, based on best evidence.
081635 - ..
081636 - [On 100606 2314 Doctor Johnson reported that Doctor Rugo
081637 - has still not returned his call from Kaiser requesting
081638 - treatment plan for Millie to recover from UCSF medical
081639 - mistakes. ref SDS 71 S66O
081641 - ..
081642 - [On 100616 0832 Jennifer did not have time to call on
081643 - Tuesday, 100615; telecon the next day indicated Jennifer
081644 - made progress on compensation to hold Millie harmless from
081645 - UCSF medical mistakes, but she has been unable to schedule
081646 - treatment, ref SDS 78 PSSV, because Kaiser's claim team has
081647 - suffered delays communicating with Millie's medical team,
081648 - as occurred the past year; Jennifer scheduled to call on
081649 - Friday, 100618, to report progress on Millie starting
081650 - treatment in time to recover from UCSF medical mistakes.
081651 - ref SDS 78 WN6N
081653 - ..
081654 - [On 100620 1112 letter to Kaiser, Medicare, and UCSF
081655 - notifies of delays communicating with medical team delays
081656 - timely treatment for Millie. ref SDS 79 L58U
081657 -
081659 - ..
081660 - 7. Due Process Standard of Care Denied a Year
081662 - ..
081663 - Standard of care for medical practice enjoys Constitutional
081664 - protections for due process since failure to perform denies
081665 - liberty and life. Reasonable exercise of due process for
081666 - evidence-based health care compares trade-offs on results and
081667 - costs of treatment [...see list below, ref SDS 0 X77U...] in
081668 - terms of suffering, time, and money (see "Evidence-based
081669 - Practice Manual," submitted to the medical team on 090725.
081670 - ref SDS 37 T58U
081671 -
081672 - [On 100609 1522 telecon with Jennifer clarified Millie
081673 - needs written opinion evaluating treatments and order of
081674 - use. ref SDS 75 XW5Q
081676 - ..
081677 - [On 100629 0013 notify CMS that Kaiser delays deny Millie
081678 - treatment violates Millie's human rights causing death
081679 - without due process to cover up medical mistakes and avoid
081680 - cost of providing care. ref SDS 80 3Y6R
081682 - ..
081683 - [On 100701 0915 Millie letter to Kaiser and Medicare
081684 - explains written medical opinion, like Doctor Rugo said
081685 - UCSF prepared on 090616, provides "road map to the future"
081686 - guiding treatment for cancer as a "chronic disease," per
081687 - Kaiser's reliance on medical opinions submitted by Doctor
081688 - Benz at UCSF. ref SDS 82 Q85Y
081690 - ..
081691 - 8. Kaiser accepting federal payment from Medicare may reach
081692 - constitutional protections against denial of life without "due
081693 - process," which at its core is simple fairness.
081695 - ..
081696 - 9. Evidence presented here shows denial of due process for over a
081697 - year, causing my health to decline toward death. In fairness
081698 - to Kaiser and UCSF (the medical team), my doctors have done a
081699 - good job extending my survival well beyond disease trajectory.
081700 - Success treating my cancer with 68 changes over 9 years
081701 - presents a complex patient profile that makes standard of care
081702 - hard work (see treatment history on 090213. ref SDS 10 AC6G
081703 -
081704 - [On 100620 1112 letter to Kaiser, Medicare, and UCSF
081705 - notifies of delays communicating with medical team delays
081706 - timely treatment for Millie. ref SDS 79 L58U
081707 -
081709 - ..
081710 - 10. Good Care Leverages Luck
081711 - Hospice After Due Process Evaluates Evidence
081713 - ..
081714 - Doctor Johnson explains I am very lucky, unique, a statistical
081715 - miracle getting continual treatment to survive stage IV cancer
081716 - for 9 years. ref SDS 10 4W72
081718 - ..
081719 - The doctor discussed ending treatment and entering hospice,
081720 - accepting death in weeks or months (see medical chart beginning
081721 - on 090213. ref SDS 10 VW63
081723 - ..
081724 - 11. Now, a year later, I continue to benefit from great care at
081725 - Kaiser and UCSF. My recent CT scan on 100218, found no
081726 - internal cancer [reported on 100228 2216. ref SDS 48 KL4P, and
081727 - summarized by Doctor Johnson's transmittal letter received on
081728 - 100228 2216. ref SDS 48 4Q54]. Since I am ECOG performance
081729 - score 0, i.e., perfectly healthy, energetic, and normal in
081730 - every respect with effective treatment [...see Kaiser Medical
081731 - Chart physical examination on 100427 0830, ref SDS 51 QRYV,
081732 - then giving up should be based on evidence of treatments, which
081733 - requires due process, simple fairness.
081735 - ..
081736 - 12. Death brings relief from pain and suffering the past 6 months
081737 - getting chemotherapy, which is ineffective, and saps every once
081738 - of energy [...reported many times for example on 100501 1037,
081739 - ref SDS 52 PQWR, and on 091112 0752, ref SDS 44 L65W...]
081740 -
081742 - ..
081743 - 13. Stage IV 11th Relapse Strategy Treatment Targeted to Cancer
081745 - ..
081746 - Doctor Johnson advised in the meeting at Kaiser on 100427, that
081747 - I need a strategy targeting treatment to my patient profile for
081748 - recovery without pain and suffering. He has ordered proactive
081749 - case management for standard of care in time to be effective.
081750 - ref SDS 51 VL6N [...Doctor Johnson advised "targeted"
081751 - treatment to recover from cancer progressing due to medical
081752 - mistakes is necessary for the reason that treatment of shingles
081753 - infection concurrent with chemotherapy, e.g., Gemzar,
081754 - Navelbine, Abraxane, lowers blood counts causing infection to
081755 - spread, leading to death; and pausing chemotherapy to treat
081756 - shingles without risk of increasing infection, causes
081757 - progression of cancer, leading to death, reported on 100302
081758 - 0830, ref SDS 50 IC85...]
081760 - ..
081761 - 14. I request the Claims Resolution Board support necessary and
081762 - reasonable medical care to recover from UCSF medical mistakes
081763 - with treatment "targeted" to my cancer for concurrent treatment
081764 - of shingles, rather than limit care to insurance policy
081765 - benefits for chemotherapy that causes shingles infection to
081766 - spread, and must be paused to treat shingles, which then causes
081767 - cancer to spread.
081769 - ..
081770 - 15. Over a year ago, Doctor Johnson at Kaiser advised that my
081771 - cancer has mutated to resist chemotherapy. The doctor asked me
081772 - to request a plan for follow on treatments from UCSF, where I
081773 - am being treated on referral from Kaiser. [...reported on
081774 - 080829 1200. ref SDS 3 PX5V...] On 090121, UCSF called and
081775 - reported they lost their list, and asked me to submit a list of
081776 - treatments. ref SDS 5 Y67L On 090325, Doctor Johnson at Kaiser
081777 - asked me for a list. The next day, on 090326, I submitted a
081778 - list and asked for standard of care to set priority for use.
081779 - ...[see case study on 090213 1140. ref SDS 10 PT3N...]
081781 - ..
081782 - 16. At that time on 090316, Doctor Johnson responded in a letter
081783 - saying "We'll talk about this at your next visit." ref SDS 19
081784 - T64N
081786 - ..
081787 - 17. This has never occurred in over a year, because the medical
081788 - team has been too busy to perform standard of care. (see again
081789 - case study on 090213. ref SDS 10 PT3N
081790 -
081791 - [On 100616 0832 Jennifer reported that Kaiser's claim team
081792 - has suffered delays resolving Millie's claim for standard
081793 - of care to recover from UCSF medical mistakes, due to
081794 - delays communicating with the doctor. ref SDS 78 WN6N
081795 -
081797 - ..
081798 - 18. Recovery Medical Mistakes Separate from Health Insurance
081799 - Benefits
081801 - ..
081802 - Delaying standard of care overlooks my entitlement to medical
081803 - services that exceed benefits for Medicare patients provided in
081804 - my insurance agreement with Kaiser and by Medicare law. Health
081805 - care to recover from medical mistakes is not limited by the
081806 - insurance agreement, but rather requires all necessary and
081807 - reasonable services and costs of recovery.
081809 - ..
081810 - 19. If Kaiser or its agent, UCSF, amputates the wrong arm, Kaiser
081811 - has to fix it. If Kaiser performs heart surgery, and leaves a
081812 - pin in the patient discovered months later causing serious
081813 - injury, Kaiser has to fix it. If competent evidence comparing
081814 - trade-offs shows the best "fix" is a clinical trial, Kaiser has
081815 - to pay for the work, and cannot ask the patient to pay for
081816 - fixing medical mistakes. Neither can Kaiser avoid trying to
081817 - fix the mistake, because solutions are not 100% certain.
081819 - ..
081820 - 20. If Kaiser sends me to UCSF for care, and I am run over by a
081821 - service truck, I am entitled to necessary and reasonable costs
081822 - of recovery. It's up to UCSF and Kaiser to work out the
081823 - details. It is no excuse to say, "Hey, we are already treating
081824 - you for a broken leg, so we don't have to fix the other leg,
081825 - nor help you recover from compounding pre-existing injury to
081826 - the first leg.
081828 - ..
081829 - 21. British Petroleum hired Transocean to drill for oil in the Gulf
081830 - of Mexico. Tansocean made a little mistake that was ignored,
081831 - despite warnings, and allowed a little mistake to grow into a
081832 - big problem. [reported by Reuters on 100508, ref SDS 60 BT9M]
081833 - BP has to fix it, and is entitled to demand performance from
081834 - Transocean. If attempts to fix the problem fail trying new
081835 - methods, BP and its agent Transocean have to keep trying until
081836 - the problem is fixed.
081838 - ..
081839 - 22. My claim to the Kaiser Claims Resolution Board is that Kaiser
081840 - paid UCSF $300 - $400 for radiation work. I was injured by
081841 - defective work discovered by UCSF on 090609, causing cancer to
081842 - spread, ref SDS 29 W65W, and impaired breathing. ref SDS 29
081843 - QG8F Injuries were compounded with the wrong treatment,
081844 - causing severe pain and suffering [...reported on 091112,
081845 - ref SDS 44 AP6J...], and in January of this year severe
081846 - shingles infection. [...reported 100104 1115, ref SDS 46
081847 - 0P9S...]; and on 100302, Kaiser further reported that
081848 - "targeted" treatment for cancer is necessary for concurrent
081849 - treatment of shingles, because chemotherapy causes infection to
081850 - spread, and pausing chemotherapy to treat shingles causes
081851 - cancer to spread. ref SDS 50 IC85
081852 -
081853 - [On 100601 0830 Doctor Johnson diagnosed Millie suffered
081854 - another potentially fatal infection from phlebitis, caused
081855 - by chemotherapy. ref SDS 68 OP4G
081857 - ..
081858 - 23. Kaiser has to fix it, and can recover from UCSF.
081860 - ..
081861 - Since UCSF offered Kaiser a requisition on 090611, to pay costs
081862 - of services UCSF ordered from Kaiser to expedite my care at
081863 - UCSF to recover from medical mistakes, ref SDS 31 YU3N, it is
081864 - unclear why Kaiser cannot say... "Yes! Send it over! We'll
081865 - take your money!"...
081867 - ..
081868 - 24. Kaiser and UCSF agreed in a letter that UCSF would fix the
081869 - problem with treatment targeted to my patient profile. [...
081870 - reported in the record on 090616 1245. ref SDS 33 KD6L
081871 - ref SDS 33 KD6L...] Targeted treatments are effective with
081872 - minimal pain and suffering from side effects, and do not lower
081873 - blood counts, and so should be the first effort under the
081874 - ancient rule of medicine "Do no harm." On 090616, UCSF began
081875 - treating me to recover from medical mistakes under the
081876 - agreement with Kaiser. A month later on 090716, UCSF quit
081877 - performing and gave misleading representations that UCSF was
081878 - merely delaying "targeted" treatment until PARP was ready in
081879 - September [... reported on 090716 2106. ref SDS 35 EE5W...].
081880 - Kaiser with UCSF complicity then treated me under my insurance
081881 - policy with chemotherapy that is not effective recovering from
081882 - UCSF mistakes, and causes agonizingly painful side effects that
081883 - turn me into a zombie [...reported on 100301 0005, ref SDS 49
081884 - OP5U...] This has the effect of driving me toward a decision
081885 - to end treatment and die without benefit of due process.
081886 -
081888 - ..
081889 - 25. What process should the Claims Resolution Board order?
081891 - ..
081892 - 1. Treat 11th relapse with PARP or equal for me to avoid
081893 - death, and recover vitality, with cancer in my skin (IBC)
081894 - subsiding, and the cancer marker return to manageable
081895 - levels.
081897 - ..
081898 - On 100108, UCSF sent a letter through email notifying
081899 - Doctor Johnson at Kaiser that UCSF will not treat me with
081900 - PARP, because I was treated with Carboplatin at UCSF during
081901 - 2008. ref SDS 47 FM5I
081903 - ..
081904 - This position conflicts with the record.
081906 - ..
081907 - On 090616, Doctor Rugo notified me that Kaiser and UCSF
081908 - agreed in a letter that UCSF would treat me with PARP in
081909 - September, which is targeted to my patient profile.
081910 - ref SDS 33 KD6L
081912 - ..
081913 - At that time, in mid-2009, UCSF exercised doctor discretion
081914 - for medical necessity to waive criteria for treating me
081915 - with MPA, and in order to meet UCSF's responsibility to
081916 - provide treatment for me to recover from life-threatening
081917 - medical mistakes caused by UCSF [...reported on 090615
081918 - 1418. ref SDS 32 EQ5H...] Waiving criteria in 2009, can
081919 - work in 2010.
081921 - ..
081922 - UCSF approved Kaiser waiving guidance against treating me
081923 - with chemotherapy in the 2nd half of 2009 [reported on
081924 - 090716 2106. ref SDS 35 EE6P, and later on 091112 0930.
081925 - ref SDS 45 QN5G...] and this year, which was ineffective,
081926 - caused agonizing pain and suffering, and caused a very
081927 - severe infection with shingles, which increased pain and
081928 - suffering, drawing me to near death. [...reported on 100104
081929 - 1115. ref SDS 46 0P9S...]
081931 - ..
081932 - UCSF can exercise doctor discretion in mid-2010 to treat me
081933 - with PARP [...for medical necessity...] that is targeted to
081934 - my patient profile (triple negative), and does not cause
081935 - painful side effects, and in order [to] meet the same
081936 - responsibility; or, UCSF can hire others to provide PARP on
081937 - behalf of UCSF, or Kaiser can hire others, e.g., UC Davis,
081938 - cited as an alternate vendor in UCSF's letter to Kaiser
081939 - received on 100108, and bill UCSF, or hold UCSF harmless
081940 - for damages from medical mistakes.
081942 - ..
081943 - 2. Provide due process standard of care evaluating list of
081944 - treatments for future relapses, ordered originally by
081945 - Doctor Johnson on 080829, for UCSF to perform [see case
081946 - study on 090213 1140. ref SDS 10 PT3N], but ignored because
081947 - everybody is too busy. Kaiser has many ways to provide
081948 - standard of care without burdening my doctor...
081949 -
081950 - [On 100609 1522 telecon with Jennifer clarified
081951 - Millie needs written opinion evaluating treatments
081952 - and order of use. ref SDS 75 XW5Q
081954 - ..
081955 - a. Tumor Board review, and bill UCSF.
081957 - ..
081958 - b. Assemble internal team to collaborate with UCSF.
081960 - ..
081961 - c. Demand performance by UCSF, who has expertise to do the
081962 - work, or can hire it done by others, e.g., MD Anderson,
081963 - Sloan Kettering, Mayo, UCLA, Stanford, et al.
081965 - ..
081966 - d. Hire others to do the work, and recover the cost from
081967 - UCSF.
081969 - ..
081970 - e. Hire others and hold UCSF harmless from responsibility
081971 - for medical mistakes providing radiation services on
081972 - referral to Kaiser.
081973 -
081974 - [On 100620 1112 letter to Kaiser, UCSF, and Medicare
081975 - advises that delay resolving Millie's claim caused
081976 - by delay communicating with medical team indicates
081977 - medical team overwhelmed by hectic schedule causing
081978 - internal gridlock that can be resolved by hiring
081979 - others to do the work. ref SDS 79 L59X
081981 - ..
081982 - f. Pay me to hire others to do the work.
081984 - ..
081985 - 26. 21 Treatments Extend Survival with Standard of Care
081987 - ..
081988 - The larger question is scope of work. Due process identifies
081989 - treatments for my complex patient profile, based on competent
081990 - evidence. No matter who does the work, they need a list to
081991 - "process," supplemented with new agents and methods.
081993 - ..
081994 - As noted, on 080829, Doctor Johnson asked me to get a list of
081995 - treatments from UCSF to be prepared for treating future
081996 - relapses. On 090121, UCSF said they lost their list and asked
081997 - me to help make a list from my records. ref SDS 5 Y67L This
081998 - was submitted, and on 090204, I got a 2nd opinion of additional
081999 - oncology solutions targeted to my patient profile. ref SDS 8
082000 - 4R3S On 090326, this was submitted to the team. As noted,
082001 - Doctor Johnson planned to discuss it at the next meeting, but
082002 - the list has not been discussed, ref SDS 19 T64N, and standard
082003 - of care has not been performed.
082005 - ..
082006 - My records show 21 treatment options for me to recover from the
082007 - 11th relapse. Standard of care for this robust list requires
082008 - professional scrutiny comparing trade-offs for best outcomes
082009 - and least cost in terms of suffering, time, and money...
082010 -
082011 - [On 100609 1522 telecon with Jennifer clarified Millie
082012 - needs written opinion evaluating treatments and order of
082013 - use. ref SDS 75 XW5Q
082015 - ..
082016 - [On 100701 0915 Millie letter to Kaiser and Medicare
082017 - explains written medical opinion, like Doctor Rugo said
082018 - UCSF prepared on 090616, provides "road map to the
082019 - future" guiding treatment for cancer as a "chronic
082020 - disease," per Kaiser's reliance on medical opinions
082021 - submitted by Doctor Benz at UCSF. ref SDS 82 Q85Y
082023 - ..
082024 - 1. Hyperthermia with new form of Doxil... proposed by Doctor
082025 - Rugo on 090130. ref SDS 7 HK3V
082027 - ..
082028 - 2nd opinion Stritter Consulting received on 090204...
082029 -
082030 - 2. MD Anderson IBC research program evaluate me to design
082031 - "targeted" treatment. ref SDS 8 4R3S
082033 - ..
082034 - 3. Phase I/II study of GM-CSF vaccine therapy with interferon
082035 - alfa and Cytoxan; Good Samaritan Hospital, Los Angeles, Ca;
082036 - Charles Wiseman, MD; primary investigator; contact: Cary
082037 - H. Gota, MD at 213-977-1214; Dr. Wiseman has been doing
082038 - cancer immunotherapy for many, many years
082040 - ..
082041 - 4. Phase I/II study of Rexin-G, a viral vector oncocidal
082042 - gene therapy for breast cancer; Epeius Clinical Research
082043 - Unit; San Marino, Ca; Sant Chawla, primary investigator;
082044 - 310-552-9999; the theory behind this vaccine is impeccable
082046 - ..
082047 - 5. Phase II study of Casodex (Bicalutamide) in androgen
082048 - receptor-positive, triple-negative BC; Memorial
082049 - Sloan-Kettering Cancer Center, NY; Clifford Hudis, primary
082050 - investigator; 212-639-5449; but tumor must be tested for
082051 - androgen-receptor first
082053 - ..
082054 - 6. Phase II study of AZD0530, a Src inhibitor for triple-
082055 - negative BC; Memorial Sloan-Kettering Cancer Center, NY;
082056 - Dr. Tiffany A. Traina, primary investigator; 212-639-5209
082058 - ..
082059 - 7. Phase IIb study of Gemzar +/-Nexavar: Memorial
082060 - Sloan-Kettering Cancer Center, NY; Clifford Hudis, primary
082061 - investigator; 212-639-5449; Nexavar as anti- VEGF activity
082062 - like Avastin but without the blood clot risk; of note,
082063 - Nexavar is similar to but not the same as Sutent (sunitinib
082064 - used for my 5th relapse beginning on November 13, 2008, and
082065 - ended on January 22, 2009)
082067 - ..
082068 - 8. Phase 1 study of PARP inhibitor; this drug is showing
082069 - exciting activity against BRCA-positive tumors (most BRCA+
082070 - tumors are triple negative); multiple studies in multiple
082071 - locations:
082072 -
082073 - • National Cancer Insitute, Bethesda, MD;
082074 - clinicaltrials.gov identifier NCT00749502, NCT00553189,
082075 - NCT00647062
082077 - ..
082078 - • Tampa, FL sponsored by Merck; clinicaltrials.gov
082079 - identifier NCT00749502; contact 888-577-8839
082081 - ..
082082 - 9. Phase I study of CNF2024, an oral HSP 90 inhibitor;
082083 - Memorial Sloan-Kettering Cancer Center, NY ; Dr.
082084 - Shanu Modi, primary investigator; 212-639-5243
082086 - ..
082087 - 10. Phase I study of Vaccinia virus injection into superficial
082088 - tumors; University of Pittsburgh Cancer Institute; Herbert
082089 - J. Zeh, MD, PhD, primary investigator; 412-692-2852 or
082090 - zehh@upmc.edu
082092 - ..
082093 - Vaccine clinical trials - new immunotherapy programs
082095 - ..
082096 - 11. Phase I study of dendritic cell vaccine; Southern
082097 - Cancer Center, Mobile, AL; Paul Schwarzenberger,
082098 - MD, primary investigator; contact Judy Motlow
082099 - 251-433-9899
082101 - ..
082102 - 12. Phase I study of mammaglobin-A DNA vaccine;
082103 - Washington University; St. Louis, MO; primary
082104 - investigator is William Gillanders, M.D. at 314-7470072
082105 - or gillandersw@wustl.edu; very exciting
082106 - possibility but not quite recruiting yet
082108 - ..
082109 - 13. Phase I trial of Ad-sig-hMUC-1/ecdCD40L vaccine; Jonsson
082110 - Cancer Center, UCLA; Sara Hurvitz, MD primary investigator;
082111 - 888-798-0719; very exciting as my cancer is very likely
082112 - MUC-positive since it is CA 15-3 positive
082114 - ..
082115 - 14. Phase II study of vaccine with Aldesleukin; University
082116 - of Minnesota; Tufia Haddad, MD, primary
082117 - investigator; 612-624-2620
082119 - ..
082120 - 15. Phase 1 study of CDX-1307 and hCG-B vaccine; Duke
082121 - University, Durham, NC: Micheal Morse, MD, primary
082122 - investigator; contact Nikki Adams, RN at 313-916-8862;
082123 - University of Pennsylvania, Philadelphia, PA; Angela
082124 - DeMichelle, MD, primary investigator; contact Adri Recio,
082125 - RN at 215-573-6760 Novel therapy outside of clinical
082126 - trials (using interventions with at least some clinical
082127 - data support):
082129 - ..
082130 - 16. Autologous vaccine (made from the patient's live
082131 - tumor); Gustavo Moviglia, MD; main lab: Buenos
082132 - Aires, Argentina; also has facilities in San Salvador;
082133 - not covered by any U.S. insurance; expensive
082135 - ..
082136 - Test Tissue for Most Effective Treatment
082137 -
082138 - 17. Chemosensitivity testing of live tumor to determine which
082139 - chemotherapy or targeted agent is most active against the
082140 - tumor; Rational Therapeutics; Robert Nagourney, MD,
082141 - medical director; contact Shari Burt at (562) 989-6455
082142 - x103
082144 - ..
082145 - 18. Molecular profile of tumor using paraffin-preserved
082146 - tissue from previous biopsy or fresh live tumor; this
082147 - test may help you find the cancer's Achilles heel;
082148 - Caris/Molecular Profile Institute; (602) 358-8900; ask
082149 - about their program where they don't charge you
082150 - even if your insurance company won't cover it
082152 - ..
082153 - 19. Vaccines with hyperthermia... Discssed with Doctor Hsu on
082154 - 090312, and presented in UCSF documentation received from
082155 - Doctor Hsu on 090220. This category of care might yield 5
082156 - - 20 viable treatments to compare with therapies like
082157 - cetuximab, MPA, PARP, etc. ref SDS 13 0164
082159 - ..
082160 - 20. Hyperthermia with radiaion... Doctor Hsu at UCSF reported
082161 - on 090423, that radiation has "2 bullets," there is still
082162 - "1 bullet" on most IBC sites, and "2 bullets" for sites
082163 - where I have new IBC that has not been previously radiated,
082164 - prominently on the right side. ref SDS 25 UG6L
082166 - ..
082167 - 21. Doctor Rugo explained a number of treatments available at
082168 - UCSF targeted to treat my patient profile, one was Avastin
082169 - (bevacizumab); UCSF is entitled mitigate damages by
082170 - proposing treatments for me to recover from UCSF medical
082171 - mistakes reported on 090514. ref SDS 26 JF9N
082173 - ..
082174 - This is another treatment also identified for my patient profile,
082175 - which was not included in my letter today...
082177 - ..
082178 - 22. Thermodox with hyperthermia was reported on 090218,
082179 - ref SDS 11 P734, to supplement 2nd opinion received from
082180 - Doctor Stritter. ref SDS 11 UH4O
082181 -
082183 - ..
082184 - 27. Patient History UCSF Radiation Treatment Medical Mistakes...
082185 -
082186 - To facilitate review and discussion between Kaiser and UCSF, I
082187 - provide details on UCSF medical mistakes, agreement to make
082188 - full correction, including to pay for costs, and sudden refusal
082189 - to perform.
082191 - ..
082192 - 28. Doctor Hsu planned and supervised my radiation at UCSF. On
082193 - 090205, he noted in examination that IBC was most severe and
082194 - intense in the breastbone area that presented a bleeding wound.
082195 - ref SDS 9 PR5K
082197 - ..
082198 - 29. Doctor Hsu advised that delay starting treatment at UCSF caused
082199 - IBC to get worse, so UCSF changed the work plan from
082200 - hyperthermia and Doxil (systemic agent) ordered by Doctor Rugo,
082201 - to more rigorous care with radiation and hyperthermia. Doctor
082202 - Hsu further increased the amount of radiation. ref SDS 9 EY5F
082204 - ..
082205 - 30. Doctor Hsu advised that changing from Doxil to radiation
082206 - delayed starting treatment to allow time for laying out
082207 - radiation zones and to order fabrication of molds that guide
082208 - comprehensive treatment. This additional preparation delayed
082209 - treating my cancer another 2 weeks in order to avoid mistakes,
082210 - making a total of 4 weeks delay. The first treatment was on
082211 - 090219. ref SDS 12 E57G
082213 - ..
082214 - 31. I notified the team on 090310 that the wound in my breastbone
082215 - seemed worse. ref SDS 14 O56X
082217 - ..
082218 - 32. Doctor Hsu examined the work on 090312. [...after initial
082219 - review in the Breastcare Clinic on the 2nd floor, 090312 0800,
082220 - ref SDS 15 9L7K, I met with Doctor Hsu and his assistant,
082221 - Chris, in the Radiation Oncology Department located in the
082222 - basement, ref SDS 15 BG4O...], I asked for an MRI test to
082223 - verify that radiation had treated all my IBC [reported on
082224 - 090312 0800, ref SDS 15 F895,, citing research on 090219,
082225 - ref SDS 6 JU4H, and...], since Kaiser had problems in 2003 and
082226 - 2004 distinguishing IBC from reaction to radiation [...see case
082227 - study on 040517 1200. ref SDS 2 S66O...] Doctor Hsu advised
082228 - that I was mistaken. He said that my radiation had been laid
082229 - out for comprehensive treatment. The doctor noted that IBC
082230 - looks similar to reaction to radiation, so patients are easily
082231 - fooled, and worry needlessly. ref SDS 15 UL5L
082233 - ..
082234 - 33. Radiation ended a week later on 090317. ref SDS 16 9L7K
082236 - ..
082237 - 34. I met with Doctor Johnson at Kaiser for backup examination, so
082238 - we don't make the same mistakes at UCSF that happened at Kaiser
082239 - misdiagnosing IBC for something else. [...see case study on
082240 - 040517 1200. ref SDS 2 S66O...]
082242 - ..
082243 - 35. A few weeks later on 090330, I met with Doctor Hsu at UCSF for
082244 - follow up examination. I was suffering pain from severe
082245 - blistering reaction to radiation, which was expected. I asked
082246 - again about the wound on my breastbone because it was still
082247 - bleeding, oozing puss, and felt differently from other areas.
082248 - I was assured again this was reaction to radiation. ref SDS 20
082249 - MN6F
082251 - ..
082252 - 36. The next day on 090331, I notified the team of new and lightly
082253 - sprinkled rash suddenly on my lower left arm. ref SDS 21 Q64R
082254 - Doctor Hsu immediately advised this was likely IBC recurrence.
082255 - ref SDS 22 R24X
082257 - ..
082258 - 37. I requested treatment [reported on 090401 0046. ref SDS 23
082259 - RE8P] Doctor Rugo responded in a letter saying UCSF had to
082260 - delay treating expanding IBC on my arm until the wound from
082261 - radiation in my chest healed. ref SDS 24 K56O
082263 - ..
082264 - 38. Doctor Rugo's prescription to delay treatment for IBC applied
082265 - Doctor Hsu's diagnosis that the "wound" was reaction to
082266 - radiation that could heal. Since the wound was cancer, it
082267 - could only heal with treatment for cancer. Therefore delaying
082268 - care on 090401, caused a small cancer in the breastbone to grow
082269 - into a huge medical problem, which I face today.
082271 - ..
082272 - 39. This was not discovered until 090607. I noticed the wound in
082273 - my chest was still getting worse, while other radiation
082274 - blistering had nearly healed. In March, Doctor Hsu asked me to
082275 - let him know if radiation blistering didn't heal in 3 months,
082276 - and in that case, he would prescribe medication to speed
082277 - healing. On 090607, I asked for examination to get the special
082278 - medication for the wound in my chest. ref SDS 28 MU6P
082280 - ..
082281 - 40. On 090609, Doctor Hsu changed diagnosis of the wound from
082282 - reaction to radiation to untreated cancer caused by mistakes
082283 - providing radiation services on referral from Kaiser. He said
082284 - UCSF is awfully sorry, but the special medication planned for
082285 - the wound back in March, wouldn't really work in June. He
082286 - explained that since cancer was untreated for 6 months, it
082287 - spread everywhere outside the zones treated with radiation, and
082288 - so needed systemic treatment. He was also concerned that
082289 - untreated cancer in the breastbone area went to my lungs,
082290 - because breathing was increasingly difficult. He was further
082291 - concerned that radiation to treat IBC on my chest, may have
082292 - caused injury to my lungs. A great many problems piled up all
082293 - at once. ref SDS 29 W65W
082295 - ..
082296 - 41. The 5 month delay at UCSF discovering mistakes that made my
082297 - cancer worse, occurred years earlier at Kaiser. From January
082298 - 2003, to May 2004, IBC on my left breast was diagnosed as
082299 - reaction to radiation, and treated for Cellulitis. On 040504,
082300 - Doctor Johnson came into the Chemotherapy Clinic when I was
082301 - getting treatment. He knelt down putting his hands on the arm
082302 - rests. Looking into my eyes, he said Kaiser is awfully sorry
082303 - about delaying my treatment, and would do everything possible
082304 - for me to recover. ref SDS 1 WI8F
082306 - ..
082307 - 42. Like Doctor Johnson in 2004, in June 2009, Doctor Hsu took
082308 - immediate action to correct the problem. He ordered CT testing
082309 - and labs, and prescribed treatment with MPA targeted to my
082310 - patient profile, with work to be performed by Doctor Rugo and
082311 - her team in the Breast Care Clinic. I was grateful that
082312 - targeted treatment recommended by Doctor Johnson at Kaiser, and
082313 - by Doctor Rugo was at last prescribed for my recovery of the
082314 - 8th relapse. ref SDS 29 1P3K
082316 - ..
082317 - 43. Doctor Hsu's findings were reported to your office the next day
082318 - in a letter on 090610, because on 090521, Expedited Claims
082319 - transferred jurisdiction to the Claims Resolution Department,
082320 - for processing my claim requesting standard of care. (for
082321 - background on your work in this matter, see case study on
082322 - 090727. ref SDS 38 BD5I
082324 - ..
082325 - 44. Later that day you implemented a work plan for Kaiser to obtain
082326 - recovery from UCSF medical mistakes that occurred under
082327 - Kaiser's referral for radiation. ref SDS 30 FU5N
082329 - ..
082330 - 45. The next day on 090611, UCSF sent a letter to Kaiser offering a
082331 - requisition to pay for CT and blood tests ordered from Kaiser
082332 - to expedite my treatment at UCSF, and demonstrating UCSF taking
082333 - responsibility. ref SDS 31 YU3N Previously Kaiser always paid
082334 - for my tests...
082336 - ..
082337 - 46. The following week during a meeting at UCSF on 090616, Doctor
082338 - Rugo advised that my care for cancer and breathing problems was
082339 - transferred to UCSF. She provided contacts for me to call
082340 - UCSF, rather than Kaiser on cancer and breathing problems.
082341 - ref SDS 33 EE70
082343 - ..
082344 - 47. At the same meeting on 090616, Doctor Rugo reported "everybody
082345 - is on board" at Kaiser and UCSF for a work plan to recover from
082346 - my injuries caused by UCSF medical mistakes. She related that
082347 - Kaiser and UCSF agreed in a letter to treat my cancer as a
082348 - chronic disease with therapy "targeted" to my patient profile,
082349 - beginning with MPA, prescribed by Doctor Hsu, and after MPA the
082350 - next treatment would be PARP, which targets my triple negative
082351 - status. ref SDS 33 KD6L
082353 - ..
082354 - 48. Doctor Rugo ordered tests at Kaiser for status change in
082355 - October 2008, and discovered I am still triple negative [...
082356 - reported on 081016 2342. ref SDS 4 J36R...]. This prevents
082357 - using many powerful new drugs to treat my cancer. Far fewer
082358 - drugs are designed for triple negative, because there are fewer
082359 - patients. Since Cetuximab targeting triple negative status
082360 - controlled my cancer for nearly 2 years starting in 2007, PARP
082361 - targeting triple negative seems promising.
082363 - ..
082364 - 49. PARP in UCSF's work plan presented on 090916, was strong
082365 - evidence the medical team performed standard of care for my
082366 - patient profile that requires proactive planning, ordered by
082367 - Doctor Johnson. After MPA and PARP there are 20 or so more
082368 - treatments targeted for my patient profile (see above,
082369 - ref SDS 0 X77U). Since I am ECOG performance score 0, able to
082370 - lead a normal life with timely treatment, I was relieved that
082371 - the medical team was well prepared.
082373 - ..
082374 - 50. Doctor Rugo's report on 090616, that "everybody is on board,"
082375 - offered a "road map" to a future worth living. Treatment
082376 - "targeted" to cancer is effective without devastating side
082377 - effects. This takes comprehensive planning, management, and
082378 - collaboration (shown above, ref SDS 0 X766).
082380 - ..
082381 - 51. As noted above, on 080829, Doctor Johnson began asking me to
082382 - get a list from UCSF for my future treatments at UCSF, because
082383 - my cancer mutated to resist chemotherapy available at Kaiser.
082384 - ref SDS 10 PT3N Each time I relapse there is less time to
082385 - stop cancer from cascading out of control. Proactive planning
082386 - is therefore essential for my patient profile now on the 11th
082387 - relapse in order for treatment to start in time to be
082388 - effective. UCSF reported having many treatments lined up for
082389 - me. However, on 090121, UCSF called and said they lost their
082390 - list. Doctor Rugo's coordinator said the doctor asked me to
082391 - help construct a list from my record of patient history.
082392 - ref SDS 5 Y67L I ordered a 2nd opinion to develop a
082393 - comprehensive list of treatments "targeted" to my patient
082394 - profile. On 090325, Doctor Johnson asked me for the list,
082395 - reflecting Kaiser's policy to rely on 2nd opinions. ref SDS 18
082396 - GO4O Kaiser has implemented all of the recommendations in 6
082397 - prior 2nd opinions I obtained. (see evidence from case study on
082398 - 090213. ref SDS 10 J58K
082400 - ..
082401 - 52. On 090326 (the next day), I submitted the 2nd opinion to the
082402 - medical team, requesting standard of care comparing trade-offs
082403 - to evaluate results and costs in terms of suffering, time, and
082404 - money, as Kaiser had done with prior 2nd opinions, and for the
082405 - purpose of proactive planning ordered by Doctor Johnson, and
082406 - requested by UCSF. Only Doctor Johnson responded, saying in a
082407 - letter that this would be discussed during the next meeting at
082408 - Kaiser. ref SDS 19 T64N This, however, has never been done,
082409 - shown by case study on 090213. ref SDS 10 PT3N
082411 - ..
082412 - 53. Since, PARP is among treatments listed in the 2nd opinion
082413 - submitted to the team on 090326 [citing research on 090204,
082414 - ref SDS 8 9J6Y, and listed the claim above, ref SDS 0 X76W], I
082415 - relied on representations in the meeting on 090616, that Kaiser
082416 - and UCSF were providing standard of care required in my
082417 - insurance agreement with Kaiser, and for UCSF to repair
082418 - injuries caused by medical mistakes.
082420 - ..
082421 - 54. I asked for a copy of the letter.
082423 - ..
082424 - 55. Doctor Rugo advised that the letter covered other patients, as
082425 - well as my case, and so UCSF refused submission. ref SDS 33
082426 - U46K
082428 - ..
082429 - 56. The next day on 090617, I sent a letter to the medical team
082430 - (Doctor Johnson, Doctor Rugo, Doctor Hsu and others) confirming
082431 - that UCSF and Kaiser agreed in a letter on a work plan for me
082432 - to recover from UCSF medical mistakes, starting with MPA, and
082433 - then PARP. ref SDS 34 VS9P
082435 - ..
082436 - 57. Resolution of my claim can therefore be aided by production of
082437 - the letter between Kaiser and UCSF agreeing that UCSF would
082438 - treat my cancer as a chronic disease for recovery from UCSF
082439 - medical mistakes, and that treatment after MPA would be PARP.
082441 - ..
082442 - 58. A month later, on 090716, UCSF called and ended treatment with
082443 - MPA, because breathing problems increased. UCSF noted that
082444 - blood clots are a rare side effect of MPA, which can impair
082445 - breathing. Earlier in May on 090514, Doctor Rugo diagnosed my
082446 - breathing problems were caused by radiation injury shown by CT
082447 - testing that found ground glass opacities in my lungs.
082448 - ref SDS 26 NL9I Testing has found no evidence of blood clots
082449 - from MPA.
082451 - ..
082452 - 59. I expected to be treated with PARP, agreed in the letter
082453 - between Kaiser and UCSF, reported on 090616. UCSF called on
082454 - 090716 at 0800p late in the evening, and advised that Doctor
082455 - Rugo was traveling, and that she sent a letter to Kaiser
082456 - disclosing that PARP would not be ready until September, and
082457 - UCSF had an emergency because the team had not lined up
082458 - treatments from list submitted on 090326, despite assurances to
082459 - the contrary, and so UCSF wanted me to get Gemzar at Kaiser,
082460 - because UCSF paying Kaiser would be cheaper than treating me at
082461 - UCSF for 2 months until PARP would begin. ref SDS 35 EE5W
082463 - ..
082464 - 60. I asked for a copy of this 2nd letter, and have asked numerous
082465 - times since the call on 090716, but have not received it [...
082466 - e.g., on 091112 0930. ref SDS 45 LQ5N...]
082468 - ..
082469 - 61. Resolution of my claim can therefore be aided by production of
082470 - Doctor Rugo's letter to Kaiser on 090716, showing UCSF
082471 - continuing to correct medical mistakes that injured me, and by
082472 - amending agreement on 090616.
082474 - ..
082475 - 62. Kaiser and UCSF knew that Gemzar and other chemotherapy agents
082476 - presented great risk for me of infection, pain and suffering
082477 - that diminish ability and will to live, and cause death from
082478 - side effects that are worse for my patient profile in the 11th
082479 - relapse, than for other patients. Kaiser's Oncology Pharmacist
082480 - called on 090601, and expressly stated that chemotherapy is
082481 - likely not effective, ref SDS 27 JH4K, and is high risk for me.
082482 - ref SDS 27 FR8L
082484 - ..
082485 - 63. After 6 months of chemotherapy I contracted severe shingles
082486 - infection. Looking hideous and suffering excruciating pain for
082487 - several months, I wanted to die, and thought I had from
082488 - medications that turned me into a zombie, reported on 100104.
082489 - ref SDS 46 PS4J
082491 - ..
082492 - 64. Thankfully, within the past month or so headaches have finally
082493 - ended, though some coloration on my right forehead remains.
082495 - ..
082496 - 65. So, on 090716, I was in shock seeing my "road map" to a future
082497 - worth living suddenly vanish.
082499 - ..
082500 - 66. Radiation injury to my lungs was getting worse. On 090720, I
082501 - was in the Kaiser ER for acute breathing pain. ref SDS 36 GE5H
082502 - In mid-September I was hospitalized for a week due to painful
082503 - breathing [...reported on 090919 0742. ref SDS 41 PQ4U...] In
082504 - mid-July, I could only hope to be lucky and survive 2-months
082505 - with Gemzar until September.
082507 - ..
082508 - 67. On 090725, I notified the medical team that I would get
082509 - treatment at Kaiser until PARP was ready in September, and for
082510 - the purpose of mitigating damages requested by UCSF. I asked
082511 - the team to perform standard of care comparing trade-offs on
082512 - treatments submitted on 090326, for results and costs in terms
082513 - of suffering, time, and money. ref SDS 37 T58U
082515 - ..
082516 - 68. On 090730, you investigated my case for review by the Claims
082517 - Resolution Department, and expected to get information from the
082518 - Outside Referrals Department who issued the referral to UCSF
082519 - that resulted in my injuries. I understood at that time, that
082520 - you asked for a letter to confirm understandings from your
082521 - contacts at Kaiser, and in order to have an accurate record to
082522 - determine my claim. ref SDS 39 BD5I
082524 - ..
082525 - 69. In September, on 090909, Doctor Johnson worried my cancer was
082526 - worse after starting Gemzar. The cancer marker increased to CA
082527 - 15-3 346. He reported that Doctor Rugo had not notified Kaiser
082528 - yet to start me on PARP. Doctor Johnson explained his schedule
082529 - had time to perform standard of care comparing trade-offs on
082530 - other treatments in the list submitted to the team on 090325,
082531 - and that he would coordinate with UCSF on switching treatments,
082532 - as UCSF planned to do in the mid-July call. ref SDS 40 VF60
082534 - ..
082535 - 70. I confirmed Doctor Johnson's work plan in a letter to the
082536 - medical team on 090922, and while still in the hospital getting
082537 - treatment for painful breathing. ref SDS 42 PQYP
082539 - ..
082540 - 71. The next few months were even more difficult. Besides painful
082541 - breathing from radiation injury, side effects of Gemzar
082542 - increased, so I spent most time in bed. I really felt
082543 - abandoned, because I had not heard from UCSF, since the call in
082544 - mid-July. I was worried that UCSF had defaulted on referral
082545 - obligations to correct medical mistakes, and this would create
082546 - a raft of new complications and more delay getting someone else
082547 - to do the work.
082549 - ..
082550 - 72. In a meeting at Kaiser on 091027, Doctor Johnson reported "good
082551 - news" that examination showed some improvement of IBC, and this
082552 - aligned with an unexpected drop in the cancer marker CA 15-3
082553 - 299. The doctor explained this buys the medical team some time
082554 - to find my next treatment. He also reported bad news. His
082555 - schedule changed, so he did not have time after meeting on
082556 - 090909, to perform standard of care comparing trade-offs on
082557 - treatments targeted to my patient profile, nor to collaborate
082558 - with Doctor Rugo on starting PARP. He related though that he
082559 - intended to make time to do this no matter what. ref SDS 43
082560 - DR6M
082562 - ..
082563 - 73. This yo-yo-like experience of good people committing to perform
082564 - standard of care, and then not having time, and then making
082565 - another plan, and having plans fail again, demonstrate extreme
082566 - difficulty performing proactive management. Daily events
082567 - always crowd out future considerations.
082569 - ..
082570 - 74. Besides growing chemotherapy side effects, uncertainty about
082571 - treatment for breathing problems, and recovering from cancer,
082572 - Rod was in the hospital getting quadruple heart bypass surgery.
082573 - Doctor Johnson was terrific placing a call from the examination
082574 - room at Kaiser in Walnut Creek, to Rod in ICU at the VA Medical
082575 - Center in San Francisco, 4-days after surgery, and to support
082576 - the meeting on 091027. ref SDS 43 GN61 We got things done, but
082577 - proactive management suffered during September to December, due
082578 - to compounding medical maladies.
082580 - ..
082581 - 75. For example, the letter to the medical team submitting the
082582 - agenda for meeting at Kaiser on 091112, preserves my
082583 - entitlement to recover from UCSF medical mistakes. ref SDS 44
082584 - L66P
082586 - ..
082587 - 76. I asked again during the meeting on 091112 to review the 20 or
082588 - so treatments submitted on 090326, to be prepared for treating
082589 - my next relapse, which would occur soon. ref SDS 44 LE3R
082591 - ..
082592 - 77. During the meeting, Doctor Johnson disclosed that he had not
082593 - had time to collaborate with Doctor Rugo on providing standard
082594 - of care comparing trade-offs for treatments targeted to my
082595 - patient profile, as planned in the meeting on 091027. Since
082596 - examination showed progression of my cancer, he felt compelled
082597 - to prescribe Navelbine, rather than wait longer for UCSF to
082598 - treat me with PARP. ref SDS 45 H54F
082600 - ..
082601 - 78. Later in the same meeting on 091112, Doctor Johnson recalled
082602 - having collaborated through email with Doctor Rugo on my care,
082603 - and that she related PARP was still not ready for me at UCSF,
082604 - and further that UCSF approved Kaiser treating me with
082605 - Navelbine. ref SDS 45 QN5G
082607 - ..
082608 - 79. I asked for a copy of this letter. The doctor left the
082609 - examination room, and returned to his personal office down the
082610 - hall to get the email with Doctor Rugo. After 10 - 20 minutes,
082611 - Doctor Johnson returned and reported that he found nothing in
082612 - his files from Doctor Rugo pertaining to my care. He couldn't
082613 - find the letter Doctor Rugo cited on 090616; nor the letter
082614 - Doctor Rugo sent to him on 090716, nor the letter cited during
082615 - the meeting on 091112 showing UCSF approved Kaiser treating me
082616 - with Navelbine chemotherapy. He then related guidance at
082617 - Kaiser that Federal HIPAA regulations deny patients access to
082618 - communications on their health care. This was discussed at the
082619 - meeting citing HIPAA language reported on 071109 that grants
082620 - patients access and copies of all their health care records,
082621 - including communications. ref SDS 45 LQ5N
082623 - ..
082624 - 80. Resolution of my claim can therefore be aided by production of
082625 - Doctor Rugo's letter to Kaiser on 090716, showing UCSF
082626 - continuing to correct medical mistakes that injured me, and by
082627 - amending agreement on 090616.
082629 - ..
082630 - 81. The medical chart for the meeting at Kaiser on 091112
082631 - illustrates collateral injury from commingling recovery for
082632 - medical mistakes, with insurance health care benefits, causing
082633 - confusion, error, and conflict. The medical chart says...
082634 -
082635 - "Review of systems:
082637 - ..
082638 - Constitutional: Appetite and energy level are stable still
082639 - able to walk Lafayette Reservoir." ref SDS 45 RT94
082641 - ..
082642 - 82. My letter transmitting the agenda for the meeting on 091112
082643 - says in part that...
082645 - ..
082646 - "I can barely function due to onerous side effects of Gemzar
082647 - treating cancer spread due to mistakes at UCSF, and from
082648 - breathing problems also caused by radiation injury at UCSF. I
082649 - cannot hike one lap at Lafayette. I can barely walk from the
082650 - parking lot to meet with you today at Kaiser due to side
082651 - effects of Gemzar." [...reported on 091112 0752, ref SDS 44
082652 - L65W...]
082654 - ..
082655 - 83. Another example of difficulty aligning the medical chart with
082656 - patient history is further in the medical chart on 091112,
082657 - saying...
082659 - ..
082660 - "I have discussed the potential risks (side effects and
082661 - complications) and benefits of the recommended and alternative
082662 - oncologic treatment(s). I have answered the patient's
082663 - questions. I believe the patient is competent and can
082664 - understand the recommendations that I have made. The patient
082665 - agrees with these recommendations." ref SDS 45 RV4V
082667 - ..
082668 - 84. This section clearly establishes standard of care to compare
082669 - trade-offs on outcomes and costs of alternative treatments, yet
082670 - there is nothing that shows anything was actually presented and
082671 - discussed [...during the meeting on 091112...]. Moreover,
082672 - representing one-sided agreement without context nor alignment
082673 - to prior and follow up history shows tremendous pressure on
082674 - doctors [...trying to perform...] claims adjusting [...from...]
082675 - commingling recovery for medical mistakes, with medical
082676 - insurance benefits.
082677 -
082679 - ..
082680 - 85. Conclusion
082682 - ..
082683 - At this time, I need immediate treatment targeted to my cancer
082684 - for recovering from medical mistakes getting radiation at UCSF
082685 - on referral from Kaiser, and which does not destroy my will to
082686 - live with agonizing side effects.
082688 - ..
082689 - 86. I need guidance on separating recovery from medical mistakes at
082690 - UCSF, from health care benefits of insurance with Kaiser and
082691 - Medicare.
082693 - ..
082694 - 87. I further need standard of care analyzing 20 or so treatments,
082695 - which the medical team has identified [...listed above,
082696 - ref SDS 0 X766...], including any newer solutions for treating
082697 - my cancer as a chronic disease, and listed herein. This will
082698 - implement Doctor Johnson's strategy for a "road map" to the
082699 - future without fear, confusion and conflict of the past year.
082700 - Smooth sailing makes life worth living for me, and provides
082701 - lessons learned for those traveling this path.
082703 - ..
082704 - [On 100609 1522 telecon with Jennifer clarified
082705 - Millie needs written opinion evaluating treatments
082706 - and order of use. ref SDS 75 XW5Q
082708 - ..
082709 - [On 100701 0915 Millie letter to Kaiser and Medicare
082710 - explains written medical opinion, like Doctor Rugo
082711 - said UCSF prepared on 090616, provides "road map to
082712 - the future" guiding treatment for cancer as a
082713 - "chronic disease," per Kaiser's reliance on medical
082714 - opinions submitted by Doctor Benz at UCSF.
082715 - ref SDS 82 Q85Y
082717 - ..
082718 - 88. If competent evidence shows my patient profile cannot be
082719 - treated, then I will end treatment and enter hospice, as
082720 - discussed with Doctor Johnson.
082721 -
082728 -
082729 -
082730 -
082731 -
082732 -
082733 -
082734 -
082735 -
0828 -