Insmed privacy policy

Last Updated: January 1, 2021

I. Introduction

This Privacy Policy describes how we at Insmed Incorporated (also referred to as “Insmed” or “us”) collect, maintain, use and disclose information from you and others (collectively referred to as “You”) when You visit our website or any other of our websites that link to this Policy (collectively referred to as the “Site”). This Privacy Policy also describes our specific policies with respect to the privacy protection we accord to personally identifiable information (“PII”). For purposes of this Policy, PII about You means information that identifies, relates to, describes, is reasonably capable of being associated with, or could reasonably be linked, directly or indirectly, with You or Your household.

Please be sure to read this Privacy Policy before using or submitting information to this Site, as You are deemed to consent to the collection, use and disclosure of information in accordance with this Privacy Policy when You use the Site.

Please note that Insmed reserves the right to revise this Privacy Policy at any time at our sole discretion. Therefore, You are urged to review the Privacy Policy each time You access this Site to ensure that You are familiar with the most current version. If we modify the Privacy Policy in a material way, we will post a notice on the Site to let You know that the Policy has been so modified. Use of this Site following such modification (or following any nonmaterial change) constitutes Your acceptance of the revised Privacy Policy then in effect.

II. How Does Insmed Collect Your PII and What Types of PII Does It Collect?

Insmed collects PII about You when You actively provide it to us, such as by completing an online form, responding to a request for information, signing up to receive communications from us, or sending us an email or letter. Some areas of this Site ask You to submit PII in order for You to benefit from the specified features or to participate in a particular activity. On the registration screen for such feature or activity, we clearly label which information is required for registration or participation, and which information is optional and may be given at Your discretion. You may always refuse to provide information to us, but this may lead to our inability to provide You with certain information, products or services or for You to participate in certain activities.

We also may collect PII about You from other sources, such as our business partners; the Internet, including social media websites; the press or other print media; and other organizations or individuals as permitted under applicable law.

Listed below are the types of PII that we may have collected about You within the past 12 months. Some of these types of information may not be PII, depending on other information we have access to about You. Each type of information listed below is PII only if the information identifies, relates to, describes, references, is reasonably capable of being associated with, or could reasonably be linked, directly or indirectly, with You or Your household.

  • Identifiers, such as Your name, postal address, online identifier, Internet Protocol (IP) address, email address, Social Security number, driver's license number, or other similar identifiers.
  • “Customer Records” information (some of which may be identifiers or professional/ employment-related information as well), such as Your name, signature, Social Security number, physical characteristics or description, address, telephone number, driver's license or state identification card number, insurance policy number, education, employment, employment history, bank account number, credit card number, debit card number, or any other financial information, medical information, or health insurance information.
  • Commercial information, such as records of personal property, products or services purchased, obtained, or considered, or other purchasing or consuming histories or tendencies.
  • Internet or other similar network activity, such as browsing history, search history, information on Your interaction with our website, mobile application(s), or an advertisement. This may include hardware and browser information of Your computer or other online device.
  • Geolocation data, such as the physical location of the device You use to connect with us online.
  • Biometric information, such as fingerprints or voiceprints.
  • Sensory data, such as audio, electronic, visual, or similar information.
  • Professional or employment-related information, such as Your current or past job history.
  • Personal characteristics that are related to classifications legally protected from discrimination, such as race, national origin, ethnicity, marital status, age and gender.
  • Inferences drawn from other PII, such as a summary we might make based on Your apparent personal preferences, characteristics, psychological trends, predispositions, behavior, attitudes, intelligence, abilities and aptitudes.

III. Our Business Purposes for Collecting PII; How We Use the Information

We may use the PII we collect from You for a variety of purposes permitted by law, including:

  • To communicate with You, including in response to Your inquiries and to fulfill Your requests;
  • To provide You with information about our products and services, and to provide You with our products and services;
  • To improve the content of the Site, including to customize the Site to Your preferences;
  • For our data analysis, product development, and marketing and research purposes;
  • To prevent fraud, including by confirming Your identity;
  • To maintain and upgrade the security of any data or information collected;
  • For risk management and compliance purposes, including to comply with law enforcement and other legal processes;
  • For any other purpose you may agree to at or before the time the personal information is collected from You.

IV. How We May Share Personally Identifiable Information

We may share the PII we collect as follows:

  • Service providers: with whom we engage to assist us with technology support, operational support and other forms of assistance, and whom we bind by contract to protect the confidentiality and security of the PII we share with them;
  • Affiliates: our affiliated entities within the Insmed corporate family, for legally permissible purposes;
  • Business purpose: In the event of a proposed or actual reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our company or its assets, to the proposed or actual acquiring party or assignee;
  • Legal purpose: As we believe to be appropriate: (i) when required by applicable law, including laws outside Your country of residence; (ii) to comply with legal process; (iii) to respond to requests from public and government authorities; (iv) to enforce the terms and conditions for use of the Sites, including this Policy; (v) to protect and defend our rights and property; (vi) to protect the interests of Insmed or others; and (vii) to permit us to pursue available remedies or limit the damages that we may sustain.
  • For any other purpose You may agree to at or before the time the PII is shared.

In the preceding 12 months, we have shared with our service providers and affiliates Identifiers, Customer Records information, Commercial information, internet or other similar network activity, geolocation data, professional or employment related information, and inferences drawn from other PII.

Absent Your consent, we do not sell Your PII and we do not share Your PII with non-affiliated entities for them to use for their own direct marketing purposes. In the preceding 12 months, we have not sold Your PII.

Additionally, we do not sell Your patient information that is deidentified pursuant to the Health Insurance Portability and Accountability Act (“HIPAA”). We may disclose for an above identified business purpose Your patient information that is deidentified pursuant to the HIPAA expert determination method.

V. Other Information Collection, Use and Sharing

As You navigate through this Site, we may automatically collect (that is, gather without You actively providing the information) certain information using various technologies and means, such as Internet protocol addresses, cookies, Internet tags, web beacons and navigational data collection. For example, Your Internet browser automatically transmits to this Site some of this unidentifiable information, such as the URL of the website You just came from, the Internet Protocol (IP) address, and the browser version Your computer is currently using. This Site may also collect information from Your computer through cookies, HTTP Logging or other technological means.

Cookies are small bits of information that are stored by Your computer’s web browser and are classified as identifying files sent to a computer by a web server. Websites read these uniquely identifying files for future access and enable servers to associate computers to user profiles. HTTP Logging consists of transaction files between a web client and server. You can decide if and how Your computer will accept a cookie by configuring Your preferences or options in Your browser. However, if you choose to reject cookies, you may not be able to use certain online products, services or features on this Site. To learn more about cookies, please visit http://www.allaboutcookies.org.

By using the Site, you are deemed to unambiguously agree to its use of any cookies and similar technologies that you do not disable.

The Site also uses third-party analytical tools to help us monitor performance and usage patterns, for example Google Analytics (http://www.google.com/analytics/). Google Analytics uses cookies to collect information about Site visitors in order to provide analytics services based on a user’s visits to sites across the Internet and across other mobile applications. For further information about the collection and use of data through Google Analytics, see http://www.google.com/policies/privacy/partners/. Google offers the ability to opt out from tracking through Google Analytics cookies; to learn about this, visit: http://tools.google.com/dlpage/gaoptout.

Some web browsers may transmit “do-not-track” signals to the websites with which the user communicates. Because of differences in how web browsers incorporate and activate this feature, it is not always clear whether users intend for these signals to be transmitted, or whether they even are aware of them. Because there currently is no industry standard concerning what, if anything, websites should do when they receive such signals, Insmed currently does not take action in response to these signals. If and when a final standard is established and accepted, we will reassess how to respond to these signals.

VI. Data Retention; Security

We will retain PII about You for the period necessary to fulfill the purposes outlined in this Policy. We endeavor to use reasonable organizational, technical, and administrative measures to protect the PII we maintain within our organization.

VII. Updates to Your PII

If You would like to update PII that You have provided to us, You may contact us through one of the means listed in the “How to Contact Us” section at the end of this Policy.

VIII. Site Use Limitations and International Data Transfers

Our Sites are not directed to users under the age of 13 and we do not knowingly collect PII online from any person we know to be under the age of 13.

Our Sites are designed for users from, and are controlled and operated by us from, the United States. By using our Sites, You consent to the transfer of Your information to the United States, which may have different data protection rules than those of Your country.

IX. Links to Other Websites

Our Sites may provide links to third-party websites. When You click on one of these links, You will be accessing content that is not subject to this Policy. We are not responsible for the information-collection practices of the other websites that You visit, and advise You to review their privacy policies before You provide them with any PII.

X. California Residents’ Privacy Rights

If You are a resident of California, You have certain privacy rights under the California Consumer Privacy Act (“CCPA”). We honor those rights, as described below, and we are prohibited by law from discriminating against You for exercising any of those rights.

A. Right to Know

Subject to certain exceptions, You have the right to know what PII we have collected about You, why we collected it, and the categories of third parties (excluding service providers) with whom we have shared the PII during the past 12 months. (See below on “How to Submit a Request.”) You may request that we provide a description of the categories of PII we have collected (a “Categories Request”) or a request for access to the specific pieces of PII we have collected (a “Specific Pieces Request.”)

If You make a Categories Request, and You do not have any type of account with us, we will need You to provide us with at least two data elements specific to You, such as Your cell phone number or mother’s maiden name (depending on the data elements we already maintain about You), so that we can verify Your identity. After we confirm that Your request is a verifiable consumer request, we will disclose to You:

  • The categories of PII we collected about You.
  • The categories of sources for the PII we collected about You (e.g., social media websites, government records available to the public, etc.).
  • Our business or commercial purpose for collecting that PII.
  • The categories of third parties other than service providers (if any) with whom we shared the PII.

If You make a Specific Pieces Request, we need to be sure we have verified Your identity with great certainty to safeguard Your privacy. In order for us to verify Your identity, if You do not have any type of account with us, You will need to provide to us at least three data elements specific to You, together with a signed declaration under penalty of perjury that You are the consumer whose personal information is the subject of the request. After we confirm that Your request is a verifiable consumer request, we will disclose to You:

  • The specific pieces of PII we collected about You that You requested.

B. Right to Request Deletion

You have the right to request that we delete any of Your PII that we collected from You and retained. We are not obligated to comply with Your request if we have a legal basis to retain the PII. If You make a request for us to delete PII, and You do not have any type of account with us, we will need You to provide us with at least three data elements specific to You so that we can verify Your identity. Once we receive and confirm that Your request is a verifiable consumer request (see below on “How to Submit a Request”), we will inform You whether we have deleted (and have directed our service providers to delete) Your PII from our records, or whether we are declining to grant Your request to delete due to an exception to the CCPA deletion requirements.

C. Exceptions

If You are working for or seeking to work for Insmed, or if You are an employee or other representative of a business or other organization that is exploring or engaging in a business-to-business transaction with Insmed, the CCPA currently does not provide You with a “right to know” or “right to request deletion” until January 1, 2022.

D. How to Submit a Request

To request access to or deletion of Your PII as described above, please submit a verifiable consumer request to us by either:

  • Calling us at our Privacy Rights toll-free number: 1-844-4-INSMED (1-844-446-7633)
  • Sending us an email at privacy@insmed.com
  • Mailing Your request to:
    Insmed Incorporated
    700 US Highway 202/206
    Bridgewater, NJ 08807
    Attention: Chief Legal Officer
    Tel: (908) 977-9900

You may make a request on Your own behalf, and if You are the parent or guardian of a minor child, You also may make a request related to Your child’s PII. If You wish to designate an authorized agent to make a request on Your behalf, please provide us with a signed declaration stating that Your intent is to permit that individual to act on Your behalf and include such individual’s full name, address, email address, and phone number. That way we will be sure You have fully authorized us to act in accordance with the requests of that individual.

As indicated above, in order to protect Your PII from unauthorized disclosure or deletion at the request of someone other than You or Your legal representative, Insmed requires identification verification before granting any request to provide copies of, know more about, or delete Your PII. We take special precautions to help ensure this. We cannot respond to Your request or provide You with PII if we cannot verify Your identity or authority to make the request and confirm that the PII relates to You. We will only use PII collected in connection with a verifiable consumer request to verify the requestor's identity or authority to make the request.

We endeavor to respond to a verifiable consumer request within forty-five (45) days of its receipt. If we require more time (up to 45 additional days), we will inform You of the reason and extension period in writing.

XI. How to Contact Us

If You have any questions regarding this Policy, please send an email to privacy@insmed.com or write to us at:

Insmed Incorporated
700 US Highway 202/206
Bridgewater, NJ 08807
Attention: Chief Legal Officer
Tel: (908) 977-9900

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IMPORTANT SAFETY INFORMATION AND INDICATION ARIKAYCE is associated with: risk of increased respiratory adverse reactions including allergic inflammation of lungs, coughing up blood, severe breathing problems and worsening of COPD.

ARIKAYCE can cause serious side effects, including:

  • allergic inflammation of the lungs. These respiratory problems may be symptoms of allergic inflammation of the lungs and often come with fever, wheezing, coughing, shortness of breath, and fast breathing
  • coughing up of blood (hemoptysis). Coughing up blood is a serious and common side effect of ARIKAYCE
  • severe breathing problems. Severe breathing problems can be symptoms of bronchospasm. Bronchospasm is a serious and common side effect of ARIKAYCE. Bronchospasm symptoms include shortness of breath, difficult or labored breathing, wheezing, and coughing or chest tightness
  • worsening of chronic obstructive pulmonary disease (COPD). This is a serious and common side effect of ARIKAYCE
  • serious allergic reactions. Serious allergic reactions that may lead to death have happened to people who take ARIKAYCE. Stop taking ARIKAYCE right away and get emergency medical help if you have any of the following symptoms of a serious allergic reaction: hives, itching, redness or blushing of the skin (flushing), swollen lips, tongue or throat, trouble breathing or wheezing, shortness of breath, noisy high-pitched breathing (stridor), cough, nausea, vomiting, diarrhea, feel cramps in your stomach area, fast heart rate, feeling light headed, feeling faint, loss of control of the bowels or bladder (incontinence), and dizziness

While using ARIKAYCE, these side effects may become serious enough that treatment in a hospital is needed. Call your healthcare provider or get medical help right away if you have any of these serious side effects while taking ARIKAYCE. Your healthcare provider may ask you to stop using ARIKAYCE for a short period of time or completely stop using ARIKAYCE.

Do not use ARIKAYCE if you are allergic to any aminoglycoside, or any of the ingredients in ARIKAYCE.

Before using ARIKAYCE, tell your healthcare provider about all medical conditions, including if you:

  • have asthma, COPD, shortness of breath, or wheezing (bronchospasm)
  • have been told you have poor lung function
  • have hearing problems, such as ringing in your ears or hearing loss
  • have dizziness or a sense of the room spinning
  • have kidney problems
  • have neuromuscular disease, such as myasthenia gravis
  • are pregnant or plan to become pregnant. It is not known if ARIKAYCE can harm your unborn baby. ARIKAYCE is in a class of medicines that may be connected with complete deafness in babies at birth. The deafness affects both ears and cannot be changed
  • are breastfeeding or plan to breastfeed. It is not known if the medicine in ARIKAYCE passes into your breast milk and if it can harm your baby. Talk to your healthcare provider about the best way to feed your baby during treatment with ARIKAYCE

Tell your healthcare provider about all the medicines you take, including prescription medicines and over-the-counter medicines, vitamins, and herbal supplements.

ARIKAYCE may cause serious side effects, including:

  • hearing loss or ringing in the ears (ototoxicity). Ototoxicity is a serious and common side effect of ARIKAYCE. Tell your healthcare provider right away if you have hearing loss or you hear noises in your ears, such as ringing or hissing. Tell your healthcare provider if you start having problems with balance or dizziness (vertigo)
  • worsening kidney problems (nephrotoxicity). ARIKAYCE is in a class of medicines which may cause worsening kidney problems. Your healthcare provider may do a blood test to check how well your kidneys are working during your treatment with ARIKAYCE
  • worsening muscle weakness (neuromuscular blockade). ARIKAYCE is in a class of medicines which can cause muscle weakness to get worse in people who already have problems with muscle weakness (myasthenia gravis)

The most common side effects of ARIKAYCE include: changes in voice and hoarseness (dysphonia), cough during or after a dose of ARIKAYCE, especially in the first month after starting treatment, muscle pain, sore throat, tiredness (fatigue), diarrhea, nausea, headache, fever, decreased weight, vomiting, rash, increased sputum, or chest discomfort.

These are not all of the possible side effects of ARIKAYCE. Call your doctor or pharmacist for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

What is ARIKAYCE?

ARIKAYCE is a prescription medicine used to treat adults with refractory (difficult to treat) Mycobacterium avium complex (MAC) lung disease as part of a combination antibacterial drug treatment plan (regimen).

It is not known if ARIKAYCE is safe and effective in children younger than 18 years of age.

This product was approved by FDA using the Limited Population pathway. This means FDA has approved this drug for a limited and specific patient population, and studies on the drug may have only answered focused questions about its safety and effectiveness.