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

[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)
[email]marianne.lonsdale@sfgov.org[/email]
[B]and cc to:
[/B]
Mayor Gavin Newsom:
[email]gavin.newsom@sfgov.org[/email]
fax: 415-554-6160
[B]and cc to:
[/B]
The Health Commission:
[email]health.commission.dph@sfdph.org[/email]

[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.

Sincerely,

Alice Dicroce

[B]And this was Ms. Lonsdale’s response:
[/B]_________________________________________
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

[B]And:
[/B]
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.

Sincerely,

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.
alice[/B]