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Grandfathering of Existing Patients

In response to questions posed by IDF, Highmark has explained how the “grandfathering” of non-preferred IgG products will be recognized and will work within the Highmark system.  Highmark’s remarks to IDF are as follows:

We (Highmark) have pro-actively entered the authorizations into our system already (prior to 4/1) and members of my team have already called all or nearly all of the physicians to tell them of their patients who were NOT affected.  So those members and physicians do not have to do anything, other than order the drug as they usually would.  Granted, our data may not be 100% accurate, so if there is a person who needs to have a coverage review, or if we missed someone in the phone-call or grandfathering process, the easiest way to have a coverage review is to have the physician (or designee) call Walgreens (our fully delegated partner) at 1-888-347-4894.   It is their dedicated prior auth line.

If you are a patient with a primary immunodeficiency disease, insured by Highmark and using an IgG product other than Gammunex-C, the preferred product, please make sure your physician is aware that your use of a non-preferred product will be covered by Highmark’s “grandfathering” of patients using a non-preferred IgG product.

IDF will continue to keep patients and physicians informed.


Posted in Highmark Policy.

Progress for Existing Patients!

The Immune Deficiency Foundation has been notified by Highmark BlueCross Blue Shield that they will be “grandfathering”, or continuing to cover, all immunoglobulin products not on their preferred formulary for those current Highmark members with a diagnosis of a primary immunodeficiency disease. Highmark is in the process of reaching out to their providers and physicians in the community to let them know that the existing covered patients with a primary immunodeficiency need not switch products.

Highmark stated that they will individually evaluate any new members on IgG therapy, based on clinical rationale.   Highmark has not promised to automatically grandfather every new member in every possible future situation, but each case can be reviewed for possible coverage.

The Immune Deficiency Foundation maintains reservations about Highmark Blue Cross Blue Shield’s formulary, and would still like to see a reversal of this J-500 policy.  However, we believe Highmark’s decision to grandfather their insured patients with primary immunodeficiency diseases that are on their current immunoglobulin therapies is a step in the right direction.

We are pleased that Highmark has chosen to acknowledge the significance of the patient-physician relationship when making important treatment decisions.  We look forward to continuing our ongoing dialogue with Highmark, so that all of their insured patients with primary immunodeficiency diseases have every opportunity to receive the high quality care they need and deserve.


Posted in Highmark Policy.

Third Party Opposition to Highmark Policy

In addition to IDF, leading medical and consumer organizations have joined the campaign to oppose Highmark Blue Cross Blue Shield’s (Highmark) J-500 policy to force their adult insured patients with primary immunodeficiency diseases and other rare disorders to switch their prescription to a single brand of immunoglobulin (IgG – a blood plasma product), regardless of their current IgG therapy.

The following organizations oppose the Highmark policy, and have issued letters to Highmark asking them to reverse their decision.  Below are the letters from each group:

National Hemophilia Foundation letter to Highmark

PAAA and PA Medical Society Joint Letter to Highmark

GBS CIDP Foundation International Letter to Highmark

A-PLUS-NORD Opposition Statement to Highmark

Global Healthy Living Opposition to Highmark J-500 Policy Fail First

Hemophilia Federation of America Highmark letter

Jeffrey Model Foundation Letter of opposition to Highmark

PA Allergy and Asthma Assoctiation Letter to Highmark



Posted in Opposition Groups.

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IDF Action Alert to Highmark

For those of you who have been asking about what you can do to help – first, thank you!  And second, you can send a letter to the Manager of Clinical Pharmacy Services at Highmark through IDF’s Action Alert System voicing your opposition to this harmful policy!


Just follow the link above to send a letter to Highmark telling them how you feel about this policy!

Posted in Action Alert.

IDF Press Release in Response to Highmark’s Proposed Policy Revisions – Still Not Enough!

Highmark Is Not My Doctor.Com

FOR IMMEDIATE RELEASE:                                                                                                                                                                                           Media Contact:

March 21, 2011                                                                                                                                                                                        Ryan Carbain, MWW, 201-964-2473

Seth Klukoff, MWW, 609-396-0067 or


Highmark’s Policy Revisions Still Leave Adult Patients with Primary Immunodeficiency Diseases at Risk

Harrisburg, Pennsylvania – Beginning April 1, Highmark Blue Cross Blue Shield (Highmark) will force a number of their insured patients with primary immunodeficiency diseases and other rare disorders to switch their prescription to a single brand of immunoglobulin (IgG – a blood plasma product), regardless of their current IgG therapy. Under the new Highmark “formulary,” even patients who are being treated successfully with another brand of IgG will have to “fail first” on the new treatment, before being allowed to switch back to their original product. In other words, patients must become ill and suffer possible life-threatening reactions before Highmark will even consider covering another IgG product for that patient.

“Immediately after our public protest last week of this unconscionable intrusion into the patient and physician relationship, Highmark responded with some proposed modifications,” stated Dr. Michael Blaese, Consulting Medical Director of the Immune Deficiency Foundation (IDF). “But they still fail to address the fundamental issue at hand – instead of doctors who are experienced in treating primary immunodeficiency diseases, Highmark will be making the determination about which IgG therapy will be the most appropriate for patients.”

IgG therapy is a biological treatment that, unlike most prescription drugs, is not generic or interchangeable. While all IgG products are FDA approved therapies for patients with primary immunodeficiency diseases, the FDA recognizes each as a unique therapy as a result of the manufacturing processes, stabilizers used, and other factors that make each product different.  In fact, patients can experience a wide range of adverse reactions to one IgG product while tolerating others without problems. Medical literature indicates that up to 34% of patients who switch from one IgG product to another will suffer adverse reactions, including severe and life-threatening reactions.

“Late last week, Highmark indicated that it is prepared to provide exemptions of its single therapy requirement for children currently stable on ‘non-preferred’ products and for patients with a history of intolerable adverse reactions when switched. But, using figures provided by Highmark, they know that this ignores 85% of the affected patient base, the adults with primary immunodeficiency diseases,” added Dr. Blaese. “Why should these adult patients be forced to go back and fail on a new therapy, when they are already stabilized?”

“And, what happens to 17 year-olds who turn 18 in a few months?  Will they now be penalized for becoming an adult?” added Dr. Blaese. “Even with the newer Highmark revisions, they may need to switch to a different therapy and risk adverse reactions, even though they’ve been stabilized for years. And this is hoisted onto them just at the time in their lives when they graduate high school, seek new careers, go to college and face other major transitions.”


Last week, IDF launched the “Highmark Is Not My Doctor” campaign with the goal of reversing Highmark’s April 1 introduction of the new formulary and to generate awareness among physicians, patients, policymakers and the public about the harmful effects of this action. The campaign includes a blog site,, to provide information about primary immunodeficiency disease and to educate patients and physicians about the new formulary and what to do to join in the opposition.

“Doctors should decide which therapy is best for a patient’s health, not Highmark. ‘Failure first’ medicine should never be an option when treating a patient – this is a terrible precedent that Highmark is setting and totally unnecessary, stated Lawrence A. LaMotte, Director of Public Policy at IDF. “For the past several months, we have talked to Highmark about the need to reconsider this draconian plan. We provided reasonable suggestions based on medical evidence that are in the best interest of the patients, yet allow the company to consider costs.”

IDF has asked that any Highmark policy should:

  • Not determine the specific IgG therapy a patient must use
  • Ensure that patients already stabilized on an IgG therapy not be switched to another therapy without medical cause
  • Allow physicians an opportunity to prescribe an alternative if they determine it is in the best interest of the patient
  • Better inform patients and physicians about its policy plans and gain direct feedback on their recommendations.

For more information about “Highmark Is Not My Doctor”, visit the campaign’s blog at or

About the Immune Deficiency Foundation

The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.



To view Highmark’s proposed revisions - Highmark Proposed Policy Revisions 1

Posted in Press Release.

Pennsylvania Allergy and Asthma Association joins in Opposition to Highmark IgG Policy

The Pennsylvania Allergy and Asthma Association (PAAA) has joined the IDF in Opposition to Highmark’s new IgG policy.  Below is the letter sent by PAAA to Highmark voicing their opposition to this harmful policy.

Please add your voice to the opposition of Highmark Pharmacy Policy Bulletin J-500!

PAAA Letter of Opposition

Posted in Opposition Groups.

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Welcome to

Welcome to!  Access this blog to follow the Immune Deficiency Foundation’s (IDF) response  to Highmark Pharmacy Policy J-500. Join us in opposing this policy and its adverse impact on individuals with primary immunodeficiency diseases. Share  your story with us and learn what you can do help.

A little background about IDF and the patients we serve

The Immune Deficiency Foundation (IDF), founded in 1980, is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

Primary immunodeficiency diseases (PIDD) represent a group of more than 150 rare disorders that are chronic illnesses caused by hereditary or genetic defects in the immune system in which part of the body’s immune system is missing or does not function properly.  People with these diseases live their entire lives being more susceptible to infections.   Without treatment,they will endure recurrent health problems and often develop serious and debilitating illnesses. However, with proper medical care, many patients live healthy, full and productive lives. Between 35,000 to 55,000 of these patients in the United States have antibody deficiencies and receive regular Immunoglobulin replacement therapy (IgG), a biologic made from pooled plasma donations, to replace the antibodies their bodies do not produce.

What Highmark Pharmacy Policy J-500 will do

Highmark BlueCross Blue Shield is a large health insurer mostly covering Pennsylvania and West Virginia.

  1. Create a restrictive formulary for IgG therapies with only one preferred product for both intravenous and subcutaneous infusions, making the false assumption that these products are interchangeable despite FDA dictum to the contrary
  2. Institute a harmful fail first policy that would require all patients to first become ill and suffer possible serious adverse events before Highmark will consider covering another IgG product for that patient, taking the decision of appropriate therapy out of the hands of doctors.
  3. Disrupt patient care for those patients that are already stabilized on an existing therapy, forcing these patients to switch to another therapy knowing that there is a risk of serious adverse reactions when switching therapies.

What this means for patients with primary immunodeficiency diseases in Highmark’s Coverage Area

Beginning on April 1, Highmark will force all of its patients with PIDD and other rare disorders to switch to Highmark’s preferred therapy. This is being done without the input of their physicians and without medical cause.  And the consequences for these patients with PIDD, as well as for the medical system, are dire.

Highmark’s Policy Makes the False Assumption that Immunoglobulin Therapies are Interchangeable

  • Highmark claims that IgG therapies are clinically interchangeable. The FDA recognizes each brand as unique and single source therapies, with no generic equivalent.  IgG therapy is a biological treatment that, unlike many other prescription drugs, is not generic or interchangeable.  As a result, patients may face a wide variety of adverse reactions to changes in this treatment.
  • In fact, according to the American Academy of Allergy, Asthma and Immunology’s Guiding Principles for safe and effective care, specific therapy should be matched to the individual patient’s characteristics, in order to ensure safety.

Highmark’s Policy Will Put Health Care Decisions in the Hands of an Insurer, Rather Than Where it Belongs, with the Doctor

  • Highmark’s policy is an unconscionable intrusion into the patient-physician relationship.  A change in therapy should only occur for a medical reason with the active participation of the prescribing physician, who is an expert in this disease and who has the patient’s best interests at heart.

Highmark’s Policy Will Disrupt Patient Care, Harming Adults and Children

  • Highmark’s draconian policy will disrupt patient care by making them switch to a new therapy, even when their current therapy is successful.  Medical literature indicates that switching treatments may cause adverse side effects, such as stroke, seizures, debilitating and long-lasting migraine headaches and severe breathing problems, among other serious medical issues.  Patients have been known to collapse on the floor, go into anaphylactic shock, be hospitalized, and even die as a result of switching products.
  • Consider that approximately one-third of all adverse effects for patients with PIDD occur during a treatment change, according to the Immune Deficiency Foundation (IDF).   Additional studies and surveys support this finding:
    1. In a 2008 Immune Deficiency Foundation national survey of PIDD patients, 41% of the patients reported that they tolerated some therapies better than others.
    2. According to a 2010 survey (Feldmeyer et al), 35% of patients experienced adverse reactions during the first 48 hours of their treatment change.
    3. Over a 13-year period, approximately 15% of patients with PIDD suffered adverse reactions when they made a therapy change, according to a 2009 study (Dashti-Khavidaki et al).

It is patently clear that Highmark is putting forth a Fail First policy.  With the new formulary of offering only one therapy, this policy only allows a change in that therapy after the patient has suffered an allergic or adverse reaction.  In other words, the policy requires that a patient be harmed before the physician can prescribe  another product that may be a better alternative.  Even when a patient has already been stabilized on a product, they must switch and to the formulary product and become ill before they are allowed to go back to using their original product.  This policy endangers patients, and treats them as human guinea pigs.

Highmark has been given the above information, but has not changed its harmful policy.  This harmful policy must be stopped for the sake of vulnerable patients who rely on this life-saving therapy.

Please join IDF in our campaign against Highmark BlueCross BlueShield’s awful Pharmacy Policy J-500 and tell Highmark that they are NOT your doctor!

Comment below to share your feelings about this harmful policy and contact IDF if you would like to be involved in the campaign.

Posted in Background Information.