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WHAT DOES A CAREGIVER NEED TO KNOW ABOUT ADA-SCID?

First and foremost, you should consult with your healthcare provider for the best advice tailored to the patient's condition. As a caregiver of an ADA-SCID patient, it is normal to experience feelings of anxiety and uncertainty. You may feel overwhelmed or nervous about day-to-day care, such as giving an injection or managing multiple health care appointments, but proper planning can help relieve some of the anxiety.

As a caregiver, you are an important part of the healthcare team for someone affected by ADA-SCID. You are the primary advocate. You may be interacting with several different doctors, so your ability to organize test results, keep healthcare records, and observe the day-to-day health of someone affected by ADA-SCID is critical. Having all, relevant information in one place such as a binder, notebook, folder, etc. is helpful to keep an organized record for management of the ADA-SCID condition.

Here are some steps that as either a patient or a caregiver you can take to make the most of your visits with a healthcare provider:

TIPS FOR EFFECTIVE COMMUNICATION WITH YOUR HEALTHCARE PROVIDERS

Communication is key in building good relationships with your healthcare providers and getting the best possible care. Here are a few tips to help you communicate effectively with your doctors and other healthcare providers.

  1. LISTS ARE YOUR FRIEND

  2. KEEP TRACK OF YOUR QUESTIONS

  3. BE PROACTIVE

  4. BE PREPARED

  5. BRING YOUR FULL MEDICAL HISTORY TO APPOINTMENTS

  6. REPORT ANY SIDE EFFECTS TO YOUR DOCTOR IMMEDIATELY

  7. KEEP YOUR DOCTOR'S APPOINTMENTS

Having all of this information organized, up-to-date, and in one place will make it easier when you are visiting a new physician for the first time. It may also help you save time in the doctor’s office, allowing more time for discussions with busy doctors. In addition, there may be times when someone else who is less familiar with your child’s medical history will have to take them to their office visit, and the binder will be a valuable resource for the doctor.

DOWNLOAD A PDF OF THESE TIPS

QUESTIONS TO ASK YOUR HEALTHCARE PROVIDER ABOUT LIVING WITH ADA-SCID

Communication is key to building good relationships with your healthcare providers and getting the best possible care. Here are some questions to consider asking your doctor:

  • How long will I need to stay on treatment?
  • Why is it important to stay on treatment without interruptions?
  • What are the possible side effects of Revcovi?
  • Will there be other doctors on my treatment team?
    • Who will be my main point of contact?
    • Do I need to see any other specialists?
    • Who should I call if I get sick?
  • What can I do to help prevent getting infections?
  • Are there any restrictions on my activity level or diet?
    • Is there a specific medical diet or are there nutritional guidelines that you would recommend?
  • Can I get all of the recommended vaccinations?
  • What are the long-term health consequences of ADA-SCID?
  • Is there an ADA-SCID support group I can join?
  • How often will I need to have my blood tested?
  • How will I know if the treatment is/isn't working?
  • If I need to be hospitalized, how long will I need to stay there?
DOWNLOAD A PDF OF THESE QUESTIONS

Important Safety Information

Warnings and Precautions:

  • If you have lower than normal platelet counts, you may be at increased risk of bleeding at the injection site. Your doctor should not prescribe Revcovi if you have severely low blood platelet counts.
  • There may be a delay in improvement of your immune system’s function after starting Revcovi treatment. During this delay, it is important to be protected from exposure to infections until your immune system improves.

What are the possible side effects of Revcovi?

  • Cough and vomiting were the most common side effects reported by patients receiving Revcovi.
  • Based on reports of side effects of other enzyme replacement therapies used to treat ADA-SCID, which are similar to Revcovi, patients taking Revcovi may also experience:
    • Blood and blood cell–related problems: red blood cells being destroyed faster than they can be made, resulting in anemia; and higher or lower than normal number of platelets in the blood
    • Skin-related problems: redness and itching at the injection site
    • Cancers of the immune system called lymphomas

What types of monitoring will be needed while I am taking Revcovi?

  • Continuous therapy and adherence to the recommended drug schedule is important for the success of the treatment.
  • While you are being treated with Revcovi, your doctor will need to do blood tests to monitor the levels of ADA activity and metabolites and overall immune function.
  • This monitoring will ensure you are maintaining appropriate levels for therapeutic benefit. If an ongoing decline in your blood’s measured adenosine deaminase (ADA) activity occurs, your immune function and clinical status will be monitored closely and precautions will be taken to help reduce your risk of infection.

What is known about taking Revcovi during pregnancy?

  • If you are pregnant or planning to become pregnant, or breastfeeding or planning to breastfeed, please talk to your doctor.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Indication

Revcovi® (elapegademase-lvlr) is indicated for the treatment of adenosine deaminase severe combined immune deficiency (ADA-SCID) in pediatric and adult patients.

Please see the Full Prescribing Information.

Important Safety Information

Warnings and Precautions:

  • If you have lower than normal platelet counts, you may be at increased risk of bleeding at the injection site. Your doctor should not prescribe Revcovi if you have severely low blood platelet counts.
  • There may be a delay in improvement of your immune system’s function after starting Revcovi treatment. During this delay, it is important to be protected from exposure to infections until your immune system improves.

What are the possible side effects of Revcovi?

  • Cough and vomiting were the most common side effects reported by patients receiving Revcovi.
  • Based on reports of side effects of other enzyme replacement therapies used to treat ADA-SCID, which are similar to Revcovi, patients taking Revcovi may also experience:
    • Blood and blood cell–related problems: red blood cells being destroyed faster than they can be made, resulting in anemia; and higher or lower than normal number of platelets in the blood
    • Skin-related problems: redness and itching at the injection site
    • Cancers of the immune system called lymphomas

What types of monitoring will be needed while I am taking Revcovi?

  • Continuous therapy and adherence to the recommended drug schedule is important for the success of the treatment.
  • While you are being treated with Revcovi, your doctor will need to do blood tests to monitor the levels of ADA activity and metabolites and overall immune function.
  • This monitoring will ensure you are maintaining appropriate levels for therapeutic benefit. If an ongoing decline in your blood’s measured adenosine deaminase (ADA) activity occurs, your immune function and clinical status will be monitored closely and precautions will be taken to help reduce your risk of infection.

What is known about taking Revcovi during pregnancy?

  • If you are pregnant or planning to become pregnant, or breastfeeding or planning to breastfeed, please talk to your doctor.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Indication

Revcovi® (elapegademase-lvlr) is indicated for the treatment of adenosine deaminase severe combined immune deficiency (ADA-SCID) in pediatric and adult patients.

Please see the Full Prescribing Information.

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