THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
rodwelch@pacbell.net


S U M M A R Y


DIARY: May 19, 2009 04:13 PM Tuesday; Rod Welch

Millie asks Kaiser to expedite treatment for 8th relapse of cancer.

1...Summary/Objective
2...Dropt Dead Date When Must Treatment Start to be Effective
3...How Much Time Does Millie Have to Prevent Losing Control of Cancer
4...Radiation Hyperthermia Request Interim Care Pending Systemic Treatment
5...Recovering from Severe Side Effects Radiation Ended 090317
6...Kaiser Loses Patient Treatment Plans Resubmit to Doctor
7...MPA Protocol Lost at Kaiser Resubmit to Primary Care Doctor
8...Primary Care Doctor Filing Appeal to Member Services


..............
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CONTACTS 
020304 -

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 51 0000. ref SDS 50 0000.
040502 -
040503 -
040504 -
040506 -  ..
0406 -
0407 -
0408 - Background
0409 -
040901 - On 090423 Millie met with Tara in the Breast Care Clinic at UCSF for
040902 - examination, which showed recovery from side effects of radiation and
040903 - hyperthermia treatments during February and March 2009. ref SDS 31 QR3M
040904 - This was confirmed in Millie's letter to the medical team later that
040905 - day on 090423. ref SDS 32 ZL6T  Tara also found expanding IBC on the
040906 - lower left arm, ref SDS 31 DW6F, also confirmed in the letter to the
040907 - medical team. ref SDS 32 ZL7P
040909 -  ..
040910 - At that time, on 090423 Tara planned to discuss with Doctor Hsu in the
040911 - UCSF Radition Oncology Department concerns about slow healing of
040912 - radiation side effects in Millie's breastbone area. ref SDS 31 R15K
040913 - Collaboration plans were further confirmed in Millie's letter to the
040914 - medical team on 090423. ref SDS 32 ZL7V
040916 -  ..
040917 - In the afternoon on 090423 1315 Millie met with Doctor Hsu to check on
040918 - recovery from radiation side effects. ref SDS 31 4H5G  Doctor Hsu gave
040919 - Millie a "thumbs up" that she was well enough to take time from
040920 - treatment to go on a 2-week vacation, ref SDS 31 FJ6K, and despite
040921 - confirming diagnosis of IBC relapse on the lower left arm, ref SDS 31
040922 - 5G4G, and despite growing doubts about vertical line of sking infected
040923 - either by IBC or radiation side effects. ref SDS 31 EX4I  The doctor
040924 - recommended against taking a biopsy because the skin was thought to be
040925 - radiated, and surrounding tissue was radiated, and so this would delay
040926 - and prevent normal recovery from a biopsy wound. ref SDS 31 456H
040928 -  ..
040929 - On 090423 2337 Millie's letter to medical team reports Doctor Hsu's
040930 - favorable report that IBC cannot recur in treated areas, because
040931 - nothing can grow in treated areas. ref SDS 32 ZL9V  The letter further
040932 - confirms UCSF plans to treat IBC recurrence on the lower left arm as a
040933 - chronic disease with systemic agents prescribed by Doctor Rugo in the
040934 - Breast Care Clinic, ref SDS 32 ZL4X, and notes the meeting scheduled
040935 - with Doctor Rugo on 090514. ref SDS 32 ZL5Q
040937 -  ..
040938 - Yesterday on 090510 1553, Millie submitted an agenda for the meeting
040939 - on 090514 to start treatment of the 8th relapse. ref SDS 33 QH9J  The
040940 - letter was hurried to fit commitments for attending Mother's Day
040941 - family event.  In the afternoon on 090510 1953, after retrurning home,
040942 - Millie sent a second letter to further explain the agenda for meeting
040943 - on Thursday 090514 at UCSF with Doctor Rugo. ref SDS 34 FJ3G
040945 -  ..
040946 - This morning, called and talked to Amanda about coordinating to
040947 - facilitate the agenda for meeting with Doctor Rugo on Thursday,
040948 - 090514, particularly on requirements for blood tests at Kaiser, as
040949 - discussed in Millie's letter on 090510 1953. ref SDS 34 LJ7X
040951 -  ..
040952 - Amanda requested a copy of Millie's letter to the medical team that
040953 - explains details about getting a lab.  Millie sent the letter to
040954 - Amanda and requested clarification on requirements for a lab.
040955 - ref SDS 35 YN33  After sending the letter to Amanda this afternoon,
040956 - Kaiser notified Millie on 090511 1427 that Doctor Johnson has a
040957 - standing order at Kaiser for Millie to get a monthly blood test,
040958 - ref SDS 36 FJ5L; so, Millie then sent a letter notifying the medical
040959 - team that the blood draw will be done on 090512, so that people can be
040960 - prepared for a productive meeting at UCSF on 090514. ref SDS 36 FJ6G
040962 -  ..
040963 - On 090511 2013, Doctor Rugo sent a letter saying that scope for labs
040964 - at Kaiser performed to support examinations at UCSF should be
040965 - determined by Kaiser rather than by UCSF. ref SDS 37 RF4J
040967 -  ..
040968 - On 090511 2313, Millie notified Doctor Rugo that case study on 090325,
040969 - ref SDS 23 KZ6N, shows UCSF has been setting the scope on labs at
040970 - Kaiser for the past 3 years that are used to guide the work for
040971 - Millie's care at UCSF on referral from Kaiser, ref SDS 38 YN4L
040973 -  ..
040974 - On 090512 Millie went to Kaiser for the lab.  ref SDS 39 6Z4F
040976 -  ..
040977 - On 090513 1654 Millie submitted results of Kaiser's lab to UCSF,
040978 - ref SDS 40 N54I, and notifies Doctor Mason at Kaiser's Outside
040979 - Referrals Department about more mistakes at Kaiser that causes poor
040980 - coordination of Millie's care at UCSF on referral from Kaiser.
040981 - ref SDS 40 ZH6W, and follows up Doctor Mason's plan on 090420 for
040982 - Kaiser to work harder with greater diligence to avoid mistakes in
040983 - order to continue doing labs at Kaiser rather than include labs for
040984 - referral at UCSF for Millie's treatments at UCSF. ref SDS 30 8G3N
040986 -  ..
040987 - Millie received a letter from Pam who works for Doctor Mason in
040988 - Kaiser's Outside Referrals Department, and asking why the Outside
040989 - Referrals Department was notified about mistakes at Kaiser performing
040990 - labs required for Millie's care at UCSF on referral from Kaiser.
040991 - ref SDS 41 2T5L
040993 -  ..
040994 - Millie replied to Pam's letter explaining patient history assists
040995 - Doctor Mason evaluate requirements for effective coordination because
040996 - chronic mistakes at Kaiser can be avoided by performing labs at UCSF
040997 - for Millie's care at UCSF. ref SDS 42 PQ5N
040999 -  ..
041000 - On 090514 0830 Millie met with Doctor Rugo, ref SDS 43 TP9L, and the
041001 - doctor prescribed treatment in the MPA clinical trial to help Millie
041002 - recover from the 8th relapse of cancer. ref SDS 43 A13N  The doctor
041003 - was encouraged about powerful new treatments becoming available to
041004 - treat Millie, ref SDS 43 3F7M, but was very discouraged saying Kaiser
041005 - would never get on board to treat Millie's cancer as a chronic
041006 - disease. ref SDS 43 3F82  As a first step to order treatment, Doctor
041007 - Rugo sent a letter to Kaiser recommending treatment for Millie with
041008 - the MPA protocol that is targeted to Millie's patient profile.
041009 - ref SDS 43 DI63
041011 -  ..
041012 - On 090514 2346, Millie sent a letter notifying the medical team,
041013 - ref SDS 44 LF3H, about the new MPA treatment prescribed by UCSF, and
041014 - cited the letter Doctor Rugo sent to Kaiser explaining prospects for
041015 - recover, ref SDS 44 WF9V; and Millie's letter further submitted the
041016 - agenda for meeting tomorrow with Doctor Johnson at Kaiser to perform
041017 - oversight review. ref SDS 44 WF9Y
041019 -  ..
041020 - On 090515 0952, Doctor Rugo sent a reply this morning to Millie and
041021 - the medical team saying that Kaiser notified UCSF that Kaiser refused
041022 - to treat Millie for recovering from the 8th relapse of cancer.
041023 - ref SDS 45 GR4O
041025 -  ..
041026 - On 090515 1017, Millie notified the medical team that Kaiser is
041027 - responsible for her care, must prescribe treatment based on the best
041028 - evidence, and that Millie will meet with the primary care physician
041029 - today at 090515 1140 and support review for ordering treatment
041030 - recommended by Doctor Rugo, and in time to effective. ref SDS 46 EY5L
041032 -  ..
041033 - On 090515 1140 Millie met with Doctor Johnson, primary care physician
041034 - at Kaiser to prescribe treatment for Millie's 8th relapse of cancer.
041035 - ref SDS 47 J47M  The doctor asked Millie to assist him preparing an
041036 - appleal to Memeber Services for clarification of incorrect guidance he
041037 - received from Doctor Mason. ref SDS 47 655R
041039 -  ..
041040 - On 090515 1518 Millie received a letter from Doctor Rugo wishing
041041 - Millie "good luck" assisting Kaiser perform the agreement to prescribe
041042 - standard of care treatment for Millie's 8th relapse of cancer.
041043 - ref SDS 48 PW7H
041045 -  ..
041046 - On 090516 0858, Millie notified Doctor Rugo that Doctor Johnson going
041047 - to bat for Millie at Kaiser to prescribe treatment by filing appeas
041048 - with Memeber Services. ref SDS 49 SY4O
041050 -  ..
041051 - On 090518 0017 prepared a draft appeal for Doctor Johnson to file with
041052 - Member Services on requirements for prescribing Millie's treament to
041053 - recover from the 8th relapse of cancer. ref SDS 50 R16I
041055 -  ..
041056 - On 090519 1536 Doctor Johnson responded to Millie's letter submitted
041057 - to Kaiser yesterday on 090518 0017, ref SDS 50 R16I, and telling
041058 - Millie he changed his mind and so would not expedite treatment by
041059 - sending an appeal to Member Services, and instead tells Millie to
041060 - submit an appeal for treatment to recover from Millie's 8th relapse of
041061 - cancer. ref SDS 51 5K7H
041063 -  ..
041064 - Today, on 090519 1613 Millie responds to the Doctor's letter this
041065 - afternoon on 090519 1536, ref SDS 51 5K7H, and asks the doctor to
041066 - prescribe treatment so she can recover from cancer, as planned by the
041067 - doctor during the meeting on 090515 1140. ref SDS 47 655R
041068 -
041069 -    1.  Subject: Draft Appeal to Member Services Authorize Clinical Trial at UCSF
041070 -        Date: Tue, 19 May 2009 16:21:30 -0700
041079 -         ..
041080 -    2.  Thanks very much for timely action on arranging for my next
041081 -        treatment, as set out in your letter this afternoon [reported
041082 -        in the record today on 090519 1536. ref SDS 51 5K7H]
041083 -
041084 -
041086 -  ..
041087 - Dropt Dead Date When Must Treatment Start to be Effective
041088 - How Much Time Does Millie Have to Prevent Losing Control of Cancer
041089 -
041090 -
041091 -    3.  For Doctor Rugo -- since progression was observed on 090331, do
041092 -        we have any idea of my "drop dead" date, such that if we don't
041093 -        start treatment I'm a lost cause?  On 090202 you wrote to the
041094 -        team that I needed urgent treatment quickly.  Doctor Hsu then
041095 -        advanced treatment several weeks, and things worked out.  How
041096 -        much time do we have in this case to help Kaiser through the
041097 -        authorization exercise?
041098 -
041099 -            [On 090522 1351 Millie asks medical team for expected
041100 -            results from prescribing treatment with single-agent
041101 -            chemotherapy that conflicts with Millie's patient profile -
041102 -            will this be weeks of agony then progression of cancer at
041103 -            Kaiser - rather than recovery with MPA "targeted" to treat
041104 -            Millie's patient profile at UCSF Cancer Center and no
041105 -            adverse side effects? ref SDS 56 2T4S
041106 -
041108 -  ..
041109 - Radiation Hyperthermia Request Interim Care Pending Systemic Treatment
041110 -
041111 -
041112 -    4.  Since I have authorization for hyperthermia and other
041113 -        modalities, including chemo at UCSF, can we come up with an
041114 -        interim solution while making arrangements for systemic care,
041115 -        which you feel I should have?  Right now the main problem is on
041116 -        the lower left arm, and it is getting worse each day.
041117 -
041119 -  ..
041120 - Recovering from Severe Side Effects Radiation Ended 090317
041121 -
041122 -
041123 -    5.  Otherwise I'm feeling stronger.  Hiked for 3 days in a row, and
041124 -        went to the gym this morning.
041125 -
041126 -
041128 -  ..
041129 - Kaiser Loses Patient Treatment Plans Resubmit to Doctor
041130 - MPA Protocol Lost at Kaiser Resubmit to Primary Care Doctor
041131 -
041132 -
041133 -    6.  For Doctor Johnson...
041135 -         ..
041136 -    7.  Yesterday, I submitted the explanation of the care [with the
041137 -        MPA protocol] proposed by Doctor Rugo during the meeting at
041138 -        UCSF on 090514 [ref SDS 43 A13N, and cited in Millie's letter
041139 -        to the medical team on 090514 2314. ref SDS 44 WF9P]  As you
041140 -        recall, I forget to bring it to the meeting with you the next
041141 -        day at Kaiser on 090515, so I left it at the front desk for you
041142 -        yesterday around noon, after a hike at Lafayette Reservoir.  My
041143 -        mind has been a whirl.  I recall that Doctor Rugo wrote you a
041144 -        letter while meeting with me on 090514, and she related
041145 -        outlines of a program to treat my cancer as a chronic disease.
041146 -        ref SDS 43 DI63  When we met on Friday, you were uncertain
041147 -        where to find Doctor Rugo's letter listing the proposed
041148 -        treatment. ref SDS 47 0V7L  Did you get the brochure on the
041149 -        proposed treatment?
041150 -
041152 -  ..
041153 - Primary Care Doctor Filing Appeal to Member Services
041154 -
041155 -
041156 -    8.  My understanding is that you will personally file an appeal to
041157 -        Member Services in order to expedite my care, and based on a
041158 -        telecon you had earlier with Doctor Mason in Outside Referrals
041159 -        [discussed during the meeting at Kaiser on 090514 1140,
041160 -        ref SDS 47 655R].
041162 -         ..
041163 -    9.  Note that I cannot file an appeal, until there is an official
041164 -        denial of service by Doctor Mason.  In order for Doctor Mason
041165 -        to deny service, you have to submit a referral.  However, you
041166 -        can make an appeal for exigent review based on your telecon
041167 -        with Doctor Mason, and urgency for your patient to get standard
041168 -        of care [responding to Doctor Johnson's letter asking the
041169 -        patient to file an appeal reported on, 090519 1536, ref SDS 51
041170 -        5K7H]
041172 -         ..
041173 -   10.  You asked me to visit Member Services after our meeting ended
041174 -        OA 2p, and submit the name of the director for the Member
041175 -        Services Department. ref SDS 47 TY5K  You also asked for a
041176 -        draft. ref SDS 47 655Y  I did these two tasks to facilitate
041177 -        your work and save you time, because writing up an appeal is a
041178 -        big job.
041180 -         ..
041181 -   11.  I think it would be helpful to submit your draft appeal to
041182 -        Doctor Mason for input, as indicated in your letter today, if
041183 -        he is willing to be constructive.  I assume you can judge his
041184 -        cooperation from the phone calls you had with him, which you
041185 -        described last Friday. ref SDS 47 T59N
041187 -         ..
041188 -   12.  The draft appeal sounds in standard of care for oncology, which
041189 -        is your expertise and practice experience.  You are also aware
041190 -        of my patient history.  In our meeting on Friday, you seemed to
041191 -        indicate that the only treatment you might be able to give me
041192 -        is Navelbine, but said this conflicts with standard of care.
041194 -         ..
041195 -   13.  The appeal explains that you can prescribe more hyperthermia
041196 -        and radiation, or hyperthermia and Doxil or some other agent
041197 -        Doctor Rugo might propose.  This regimen has proven effective,
041198 -        and Doctor Mason has already approved payment.  However, Doctor
041199 -        Hsu at UCSF advised on 090425 that standard of care for
041200 -        oncology requires withholding further hyperthermia, pending
041201 -        systemic treatment by Doctor Rugo.  As you know from patient
041202 -        history, that is the standard of care you presented to me on
041203 -        030710, on 040318, on 041130, 041230, and on 070105, long
041204 -        before I ever heard of Medicare.  Since that standard of care
041205 -        has been effective it seems reasonable to apply that standard
041206 -        to the current situation.
041208 -         ..
041209 -   14.  Since you were able to prescribe standard of care for me
041210 -        without regard to Medicare in 2003, 2004, and 2007, then you
041211 -        can prescribe standard of care for me today.
041213 -         ..
041214 -   15.  The very nice woman who works for Doctor Mason told me on
041215 -        090401 that nobody knows Medicare rules.  They are an
041216 -        unfathomable labyrinth.  Appealing on the basis of standard of
041217 -        care falls within your expertise and experience, Medicare rules
041218 -        are irrelevant.
041220 -         ..
041221 -   16.  In any case, the last thing I want to do is get sideways with
041222 -        you and Doctor Rugo.  My only hope of survival rests in your
041223 -        good hands.  We can re-do the draft in a manner that fits your
041224 -        view of the case.
041226 -         ..
041227 -   17.  Please give me a call to discuss this.  Right now I am
041228 -        concerned about running out of time.
041229 -
041230 -            [On 090519 1643 Millie called Kaiser to speak with Doctor
041231 -            Johnson in order to expedite prescribing treatment; the
041232 -            doctor did not call back. ref SDS 52 9G57
041234 -             ..
041235 -            [On 090520 1052 Millie called Kaiser again and was told
041236 -            Doctor Johnson said he was in meetings all day and could
041237 -            not call Millie to prescirbe urgent treatment. ref SDS 53
041238 -            IW6O
041240 -             ..
041241 -            [On 090520 1113 Millie received a letter from Doctor
041242 -            Johnson saying Kaiser "offers" Millie Gemzar or Navelbine,
041243 -            and confirmed these "single-agent" chemotherapy drugs are
041244 -            high risk of failure and causing harm for Millie's patient
041245 -            profile, and said Member Services and Outside Referrals
041246 -            interpret clinical trials for Millie to recover from 8th
041247 -            relapse of cancer. ref SDS 54 UC9G
041249 -             ..
041250 -            [On 090520 1710 notified medical team of having left
041251 -            telephone messages trying to schedule urgent treatment for
041252 -            Millie in time to be effective, and which have not been
041253 -            returned for several days. ref SDS 55 ZF5R
041255 -             ..
041256 -            [On 090528 1228 Millie notifies Kaiser Member Services
041257 -            Claims Resolution Department that email is the only means
041258 -            of communication with Kaiser, because everybody is too busy
041259 -            to return calls. ref SDS 57 4N8U
041260 -
041267 -
041268 -
041269 -
041270 -
041271 -
041272 -
041273 -
041274 -
041275 -
041276 -
041277 -
041278 -
041279 -
041280 -
041281 -
0413 -