[Ip-health] Cancer Patients Aid Association Responds to Max Foundation

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[ Picked text/plain from multipart/alternative ]
Below is the text of the letter sent by the Cancer Patients Aid Association=
 in response to the Max Foundation's open letter in support for Novartis.

  ..........................

  Dear Ms Garcia-Gonzalez:

  Though you have not addressed a letter to us, we understand that you have=
 issued a recent statement on the Max Foundation website imploring Mr. Y. K=
. Sapru, head of the Cancer Patients Aid Association, =93to set politics as=
ide=94 and to refer all patients =93in need of treatment for their disease =
to the MaxIndia Office.=94  In response, we are sending this open letter ad=
dressed to you.

  Firstly, we find it astonishing that the Max Foundation, whose stated vis=
ion is fostering =93global access to leukemia treatment one patient at a ti=
me,=94 would choose to serve as a mouthpiece for its corporate patron rathe=
r than for patients=92 rights.

  We are sure that even the Max Foundation would not dispute that patents o=
n medicines lead to exorbitant drug prices.  CPAA believes that medicines s=
hould be available and accessible to patients at affordable prices.  Patien=
ts should not have to depend on charitable dole-outs by pharmaceutical comp=
anies to access medicines essential to them.  More so, when such a single s=
ource of supply can never be a guaranteed source of medicines.  We believe =
that one way of ensuring accessibility and affordability is to prevent the =
patenting of drugs that are not new and do not meet the other patentability=
 standards.  Denial of patent protection to frivolous claims allows other p=
harmaceutical companies to manufacture and market a drug, thus leading to c=
ompetition and inevitably lower prices.  At lower prices, patients are able=
 to purchase drugs themselves or with help of subsidies from other organisa=
tions.  This is especially true in developing countries.

  This is borne out by our experience in India where Novartis, after it was=
 granted Exclusive Marketing Rights for Glivec (imatinib mesylate) in 2003,=
 obtained court orders restraining seven of nine Indian companies from mark=
eting generic versions of Glivec.  Expectedly, the remaining generic compan=
ies were unable to meet the demand for the drug. CPAA, which was purchasing=
 these generic versions and supplying it to patients, found it very difficu=
lt to continue to provide treatment to its patients.

  We strongly believe that the particular form of imatinib mesylate, which =
Novartis seeks to patent, is not a novel drug that satisfies the patentabil=
ity standards.  This is the reason that our organisation is opposing Novart=
is in its attempt to obtain a monopoly for Glivec in India through a patent=
.  Our reasoning is only strengthened by the finding of the office of the P=
atent Controller of India.

  If the Max Foundation were truly concerned about fostering global access =
to leukemia treatment, then it would be joining hands with CPAA in ensuring=
 that affordable generic versions of Glivec are made available to all those=
 who need it.  We strongly feel that affordability of drugs rather than dep=
endence on charity is a more dignified way for every patient to attain the =
right to health.

  In response to your request that CPAA refer all its patients to the Max F=
oundation for treatment, let us put out certain facts that need to be consi=
dered.

  Some of our patients had approached Novartis India seeking free Glivec.  =
The experience, to say the least, was disappointing.  In one instance, one =
of our registered patients had to wait for a long time and purchased Glivec=
 at a cost of approximately USD 300 per month for about 13=9614 months befo=
re Novartis India ultimately provided Glivec free.  During this time, the f=
amily ultimately lost its life savings and went through tremendous mental a=
gony and trauma.  Our patients have also informed us that they were subject=
ed to strict scrutiny at Glivec Patient Assistance Programme (GIPAP) before=
 being approved to receive free Glivec.  Patients were expected to have gon=
e through the entire progression of treatment from hydroxyurea to interfero=
n and were offered Glivec only if these treatments had failed.  Many patien=
ts were denied free Glivec at that stage.  Such experiences gave rise to se=
rious misgivings in our minds about GIPAP.

  We sent repeated letters to Mr. Ranjit Shahani, Vice-President and Managi=
ng Director, Novartis India, seeking clarifications about the Max Foundatio=
n, the eligibility criteria, the ethical standards that would be followed b=
y the Max Foundation and also assurances of free uninterrupted life-long tr=
eatment.  The letters were sent to Mr. Ranjit Shahani as the Max Foundation=
 operates from the office of Novartis, India in Mumbai and, by all accounts=
, GIPAP is administered by Novartis.  These letters have drawn a blank.  We=
 are yet to receive any response from Novartis India answering the question=
s raised by us.

  In the meanwhile, numerous accounts of questionable practices by the Max =
Foundation in administering Novartis=92 =93free=94 GIPAP programme in other=
 countries have come to light.  These have only confirmed the misgivings of=
 our patients.

  A New York Times article entitled, =93Company=92s Vow to Donate Cancer Dr=
ug Falls Short.=94 published in 2003 recounted Novartis=92 strategy for sta=
rting GIPAP.  According to this article, Novartis=92 own internal documents=
 revealed that a key component of GIPAP was =93Max Patient Advocacy Work,=
=94 with the ultimate aim of getting Novartis reimbursed for the =93free=94=
 medicines it was distributing through the GIPAP.  The article related expe=
riences from South Korea, Hong Kong and New Zealand, where Novartis had all=
egedly used patients already on Glivec to pressurise governments to pay for=
 the drug.

  Furthermore, we are sure you are aware that a criminal complaint was rece=
ntly filed in Argentina accusing both Novartis and the Max Foundation of =
=93abusive, unlawful practices,=94 and =93acting in connivance=85through di=
fferent deceptive practices=94 in administering the GIPAP programme.  Accor=
ding to the criminal complaint, the administration of the GIPAP programme i=
n Argentina was nothing more than a ruse to use leukemia patients as pawns =
in getting health insurance companies to include imatinib mesylate in its p=
lans.  A news article entitled, =93The Worst Kind of Deceit:  Fraud by Nova=
rtis and the Max Foundation Targets Patients,=94 originally published in Sp=
anish by the magazine El Medico, explained:

  =93The Program kept a 3-month reserve supply of Glivec for the patients. =
 When the dose for the first phase of the treatment were delivered to the p=
atients, including a 30 day supply to cover their immediate initial needs, =
the patients or their relatives were instructed to retain an attorney to st=
art legal proceedings against the health care institutions which did not in=
clude Glivec in their formularies.  After that, the provision of Glivec by =
the [Max] Foundation through their GIPAP Program was stopped.  The investme=
nt by Novartis consisted of a single treatment [i.e. for one month] and the=
n the company recovered its so-called donation by forcing the health care i=
nstitutions to buy the product.=94

  Given the troubling accounts of our own patients who have been involved i=
n GIPAP, as well as the disturbing accounts from abroad, our patients do su=
ffer from misgivings about your Foundation and therefore are hesitant in ap=
proaching you when there are possible alternate sources available.

  We also draw your notice to the fact that Novartis is not only seeking a =
patent for Glivec in India but has also challenged Section 3(d) of the Indi=
an Patents Act, 1970=97a provision introduced by Indian Parliament to count=
er the infamous practice of evergreening by pharmaceutical companies.  This=
 challenge to Section 3(d), if successful, would also affect the affordabil=
ity and accessibility of medicines for other diseases, including HIV/AIDS, =
TB and malaria.  As a patients=92 group, we feel that it is our moral duty =
to oppose any attempt to restrict the availability, affordability and acces=
sibility of medicines for all who need them.  In view of the fact that the =
Max Foundation supplies only medicines to treat leukemia, you should have n=
o hesitation in urging Novartis to withdraw its challenge to Section 3(d), =
which would impact access to affordable medicines for other diseases.

  On the issue of patents, we call upon you to reconsider your position and=
 support patients in their struggle to access medicines at affordable price=
s.  Surely, the absence of a patent protection for Glivec in India or the I=
ndian patent law does not hinder Novartis from continuing to provide Glivec=
 free to patients through GIPAP.

  Our deeply considered view is that patients are entitled to affordable me=
dicines and treatment as a matter of right.  Undoubtedly, charity, aid and =
donation do assist some patients in accessing medicines.  However, we stron=
gly deplore the use of such charitable actions to justify actions of corpor=
ate sponsors that would take away a patient=92s right to affordable medicin=
es and treatment.

  Sincerely,


  Y.K. Sapru
  Chairman, Cancer Patients Aid Association


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