I’m asking for your support– A call to arms !!

    • Anonymous
      March 22, 2009 at 12:16 pm

      [B]I am asking for your support in sending an email or fax to one person and copy it to two other emails. They are as follows:[/B]

      Marianne Lonsdale
      415 554 1752 (fax)
      [B]and cc to:
      Mayor Gavin Newsom:
      fax: 415-554-6160
      [B]and cc to:
      The Health Commission:

      [B]I appealed to our city’s Health Services System to simply have my new benefits be made active now, rather than the usual effective date of july 1st. 4 more months…[/B]

      Mr. Mark Villares, March 20, 2009

      Firstly, thank you for your responsiveness this past week.
      However, as today is Friday, and you have had numerous compelling documents in your possession for one week, since March 16, 2009, that clearly indicate medical necessity– and still, no decision has been made. For clarity, the documents I have provided to you are as follows:

      • A letter from me explaining my situation and a request for early activation of a benefits change dated March 16, 2009.
      • A letter written by Dr. Jonathan Katz to the Department of Public Health for entry into the Catastrophic Illness Program dated on February 23, 2009. (I am currently in the CIP, #001471)
      • As per your request, on March 17, 2009, I faxed you 16 pages of Blue Shield and Brown & Toland denials with corresponding appeals.
      • A faxed letter dated March 19, 2009 from Dr. Richard Burt from Northwestern Memorial Hospital stating medical necessity and the need for an urgent benefits change.
      • A letter dated March 17, 2009, faxed March 19, 2009 written by the DMHC denying assistance with coverage.

      Mr. Villares, are you in a position to make the decision? If not, who does make such decisions? Who is your direct supervisor? And does he or she have the authority to make the decision? Because of your responsiveness and kindness, as I stated to you on the telephone on March 16th, I wanted to allow you a reasonable amount of time to decide upon my case without seeking advocacy. I doubt that anyone wants the responsibility of my death or irreversible damage to my body; please, comprehend the urgency and resolve this matter.

      I also want to point out that two summers back (May 07), due to an address mix-up, someone was kind enough to change my benefits outside of the normal open enrollment period. If you check your records, you will see that my benefits were changed as stated. This time, I am not asking for a whimsical change and exception. As stated in my letter and the letters of two neurologists, my health condition is severe and I am unable to get the health care I need with my current insurance carrier, blue shield.

      Please, if exceptions are ever made, which they clearly are– in this particular, life-threatening case, my case, I must believe that a bureaucratic deviation in decision making is a simple one.

      Mr Villares, I truly appreciate your kindness and availability, your calls and emails – but please understand the state of anxious limbo given the consequences of this decision.


      Alice Dicroce

      [B]And this was Ms. Lonsdale’s response:
      Mark Villares is keeping me up to speed on your situation. HSS is denying
      your request to change health plans from Blue Shield to City Plan. To
      switch health plans midyear, you must have a qualifying event.
      Dissatisfaction with your health plan is not a qualifying event. HSS does
      not allow changes due to reasons other than qualifying events because HSS
      needs to treat members consistently, and because the IRS requires health
      plans to limit changes to qualifying events.

      You will have an opportunity to change health plans during open enrollment
      in April, with an effective date of July 1, 2009. You might want to
      discuss your situation with UnitedHealthcare, the City Plan administrator,
      during the open enrollment period.

      Marianne Lonsdale
      Chief Operating Officer
      [B]here are the two letter written by two different specialists in two different facilities:[/B]

      Northwestern University School of Medicine
      Richard Burt, MD
      Chief, Division of Immunotherapy
      750 North Lake Shore Drive, suite 649
      Chicago, IL 60611
      TEL (312) 908-0059
      FAX (312) 908-0064

      March 19, 2009

      RE: Alice Dicroce
      DOB: 10/7/1965

      Health Service System
      San Francisco

      Dear Mark Villares,

      Your employee of the San Francisco police department, Alice Dicroce is enrolled currently in your benefits program with Blue Shield and will be changing her benefits during open enrollment on April 1st to United Health Care. We are requesting that her benefits be activated immediately upon enrollment rather then delaying activation until July 1st.

      Alice Dicroce is a 43 year old female who came from San Francisco to Northwestern Memorial Hospital in Chicago to be seen for consideration for a hematopoietic stem cell transplant for her Chronic Inflammatory Demyelinating Polyneuropathy, CIDP. After examination she is clearly a good candidate for a stem cell transplant. Blue Shield has continuously denied coverage of Alice’s treatments and will continue to deny her coverage. Alice has decided to change her insurance to United Heath Care in hopes that she will be covered for a stem cell transplant in the near future and not have to wait another 4 months untreated.

      We have found that early treatment in patients’ with CIDP is essential for a successful outcome. CIDP is initially an immune mediated demylinatination disease responsive to immune suppression/modulation. After accumulated injury, it manifests as an axonal degenerative process not responsive to any treatment. Therefore immediate treatment is essential before axonal degeneration and neuronal atrophy become a predominate manifestation of the disease.

      Without cessation of her disease, Alice is at high risk of not just death, but a slow and painful decline in her health with repeated hospitalizations. We are requesting immediate attention to our request for an expedited review and activation of Alice Dicroce’s enrollment in United Health Care benefits plan in order to proceed with our treatment.

      Thank you,

      Richard Burt, MD

      February 23, 2009
      Dear Ms. Fu-dong,

      In your last correspondence provided by my patient, Alice DiCroce, the following information was requested:

      CIDP has a variable manifestation and prognosis. A “physician” needs to describe the manifestation of CIDP in this patient and at this time as life threatening

      CIDP is a variable and highly unpredictable disease. Alice has a severe form and has had weakness the muscles of all four limbs, with severe sensory loss and areflexia. These are typical of CIDP. Electrodiagnostic testing reveals classic features of demyelination with prolonged distal latencies, conduction slowing and block as well as axonal damage.

      I was hopeful that it would remit on its own, but after a few months, she deteriorated severely requiring prompt and aggressive treatment with several medications including intravenous immunoglobulin (IVIg), prednisone, cyclosporine, and pain and anti-hypertensive medications. Subsequently, she has been enduring several difficult adverse side effects including relatively severe hypertension, and has needed ongoing and high doses of medications. Despite this, there is also likely to be some degree of persistent neurological injury with weakness in the legs because of damage that has already occurred. There is also potential for further injury as we try to balance the side effects of the medications by lowering drug doses with the high risk of relapse that occurs with this disease.

      [B]At this time we are managing:
      [/B]•Risk of infection due to immune suppression
      •Hypertension (due to treatment side effects)
      •Severe and constant pain, a common complaint in CIDP
      •Severe weakness, some may be permanent
      •Tremors from CIDP
      •Risk of renal failure from cyclosporine
      •Gastrointestinal distress
      •Severe debilitation, unable to walk unassisted
      •Periods of bowel and urinary incontinence

      Whether from the unpredictability of CIDP itself, or from complications resulting from treatment, there does exist some life-threatening potential for this patient.

      Alice DiCroce has a severe form of CIDP and in my professional opinion, she is undoubtedly catastrophically ill under any conceivable definition of “catastrophic illness.”

      Should you have any further questions, please feel free to contact me.


      Jonathan Katz, MD
      Director Neuromuscular Diseases
      Forbes Norris ALS/MDA Center

      [B]I am asking for your support in this matter as we all stand to benefit from its outcome. Please, let’s stick together and help set a precedent that will likely help all of us suffering from this dreaded disease!

      Because I have been a police officer for so long in a large city, I am fortunate to have the support of that large group of people. They have supported me financially and emotionally—and as of late, some 200 letters have already been written!!

      But this is our fight. We share this. Won’t some of you, if you feel well enough, take a few moments to email these folks? Everything that happens with me through this battle effects all of you in terms of precedent. There will likely be media coverage as the police and the media have on-going significant contact.

      My involvement with this forum has been wonderfully educational, albeit sad… I have not been one to seek much support here and have instead been more of an informer—about what’s going on with me. This time, I need you all!!

      Please join me and write what you feel to those standing between me and the treatment my doctors say I certainly need.

      Thank you in advance.

    • Anonymous
      March 22, 2009 at 4:41 pm

      Hi Alice,
      I am curious on this.
      First, I always was under the impression, that you would not be allowed into a new health insurance company, if you had a pre-existing condition.
      It is a little confusing on some of the stuff you wrote, but it looks like to me you are switching from the evil people at Blue Cross, and switching to a totally different company called UnitedHealth. Is that right?
      And if so, are they accepting you into their coverage, even with a pre-existing condition?
      And do they even know yet, that you’re going to be throwing a whopper at them, in asking for coverage for the SUPER EXPENSIVE stem cell transplant?
      Do you even know they will cover you for that?
      When I was doing some digging on the transplant, I, too, was told I would probably be accepted. But they told me it is listed as an “experimental procedure”. and health insurance companies do NOT usually cover experimental procedures.
      Sweet Alice, I am definitely NOT trying to put a whammy on this. I just need to know if I am understanding your situation correctly, and if the new company has agreed to cover you for this procedure. I’d hate to see you go through the hassles to switch, if they don’t intend on covering you for the transplant.
      I will write to whoever you ask me to…just let me know on the above.
      Best always,

    • Anonymous
      March 22, 2009 at 4:48 pm

      yes, they will cover it.
      yes i can switch w/a pre-existing condition because it is “group” insurance.
      and yes, northwestern is in-network with the insurance i seek.

      thank you,

    • Anonymous
      March 22, 2009 at 5:06 pm

      Hi Alice,
      What does she mean by “qualifying event”?
      Wouldn’t a major surgery of stem cell transplant be considered a qualifying event?
      If not, then she needs to explain, in English and not insurance-talk, what she is referring to a “qualifying event”, that she stated in her reply.

    • Anonymous
      March 22, 2009 at 5:11 pm

      Ken – Insurance companies can deny you for a pre-existing condition only if your coverage has lapsed. If you are covered & switch companies then you can’t be denied. If you lose your insurance and then get Medicaid then you can be denied later on if you try to go back to a “regular” insurance.

      Some insurance companies will cover experimental procedures & others won’t. I have a friend who has a son with leukemia. He was entered into a trial & his insurance company refused to cover it but other kids (with different insurance) had no problems.


    • Anonymous
      March 22, 2009 at 5:24 pm

      Hi again,
      With my insurance company, I have an HMO, where with EVERY procedure, (like my chemo.), or even a doctor’s visit with a specialist, (to see my neuro, my rheumatologist, etc.), they have to request it with the health insurance company, and they reply with either an approval or a denial.
      Has your new planned health insurance company already told you they will approve the procedure?
      Or do you not have to go through an approval process?

    • Anonymous
      March 22, 2009 at 5:28 pm

      i’ll be switching to a ppo– things work differently.
      northwestern is networked with them and have told me that after over 300 stem cell transplants, numerous covered by united health care, all were approved easily.

      so technically i have to request it and get approved… but it should be no problem.

    • Anonymous
      March 22, 2009 at 8:25 pm

      I, too am curious as to what they consider a “qualifying event” to be.

      Alice, you have come so far, I sure hate to see this fall thru for you. Wow.

      I will do what ever I can to help you. I will send my email for you tomorrow morning, first thing.

      You are facing a MAJOR battle with this insurance stuff…

      prayers that all works out and you get what you need…for you….for us.


    • Anonymous
      March 23, 2009 at 11:02 am

      and thanks to anyone else who wrote on my behalf.
      i appreciate it much.

    • Anonymous
      March 24, 2009 at 1:32 am

      Alice – Did you ever find out specifically what a “qualifying event” was?