One nurse’s message to sickle cell disease patients during COVID-19: Get the care you need and deserve

As a nurse practitioner traveling the country to help fill the ongoing nursing shortage, Lakesha Dickerson has had a front-row seat to the COVID-19 pandemic. But Dickerson has viewed the pandemic through another lens, too — she is a Black woman living with sickle cell disease (SCD).

When she was diagnosed with SCD, Dickerson was told she wouldn’t live past her 30s. SCD is a devastating inherited blood disorder that occurs in one out of every 365 African American births and impacts more than 100,000 people in the United States.[1] The lifelong inherited blood disorder occurs when red blood cells change shape, becoming rigid and deformed in a sickle, or crescent, shape. The cells become stiff and sticky, causing them to block blood flow and break down inside the blood vessels. The disease requires complex, multi-disciplinary care, but unfortunately many patients face significant challenges getting the care they need and deserve. Dickerson wants to change that.

“Since I was little, my experience with sickle cell disease has opened my eyes to the positive impact healthcare professionals can have on patients. On the other hand, it has also shown me the struggles and racial biases that people of color often face to get needed medical care,” she said.

COVID-19 has magnified the health disparities faced by the Black community, from discrimination and stigma to the lack of qualified providers. People living with SCD, called “warriors” because of the significant battles they fight, especially struggle to continue their care while navigating the deadly virus. People with SCD are among the populations most vulnerable to severe illness and death from COVID-19.[2]

Finding hope

Because of the challenges she faced, Dickerson decided at age 15 to become a nurse to help others on their own health journey. Meanwhile, her SCD symptoms only became more challenging as she grew older. But none of the available treatment methods seemed to help.

After speaking with her doctor, Dickerson learned about a clinical trial for people with SCD and was able to enroll in the study. She received, Oxbryta® (voxelotor) tablets, a prescription medicine used for the treatment of sickle cell disease in adults and children 12 years of age and older. It is the first approved medicine that specifically targets the sickling of red blood cells, or hemoglobin polymerization, which is the root cause of SCD.

It is not known if Oxbryta® is safe and effective in children below 12 years of age. This indication is approved under accelerated approval based on increase in hemoglobin (Hb). Continued approval for this indication may be contingent upon verification and description of clinical benefit in confirmatory trial(s). Please see Important Safety Information below. For additional information, visit Oxbryta.com.

Now Dickerson wants to empower others with SCD to get the care they need. “Take control of your health and speak to your doctor about available treatment options,” she said.

Confidence in the COVID-19 vaccine

Recently, Dickerson temporarily relocated to Texas to combat the country-wide nursing shortage, caused in part by the pandemic. After seeing, first-hand, the toll of COVID-19 on her patients, she wants to encourage others, especially her fellow SCD warriors, to get the COVID-19 vaccine when available.

“As a nurse attending to up to 12 patients at a time, I was terrified of the risks associated with COVID-19, and as an SCD patient, I was extremely anxious because of the increased danger I put myself in each day going to work,” she said. “Once vaccines were available, I regained hope, though I was initially skeptical, but I did my research and listened to the science, ultimately deciding that receiving the COVID-19 vaccine was the best decision for my family and me.

Dickerson hopes her journey will encourage other SCD patients to take precautions, including getting vaccinated. Even as more of the population receives the vaccine, it’s important for SCD patients to closely follow all CDC recommendations and continue to work with their care team to manage their SCD.

The last decade of SCD research has seen more progress than in the prior 50 years, and this offers hope to those suffering from SCD and their loved ones.

INDICATION

What is OXBRYTA?

OXBRYTA is a prescription medicine used for the treatment of sickle cell disease in adults and children 12 years of age and older.

It is not known if OXBRYTA is safe and effective in children below 12 years of age.

This indication is approved under accelerated approval based on increase in hemoglobin (Hb). Continued approval for this indication may be contingent upon verification and description of clinical benefit in confirmatory trial(s).

IMPORTANT SAFETY INFORMATION

Do not take OXBRYTA if you have had an allergic reaction to voxelotor or any of the ingredients in OXBRYTA. See the end of the patient leaflet for a list of the ingredients in OXBRYTA.

If you are receiving exchange transfusions, talk to your healthcare provider about possible difficulties with the interpretation of certain blood tests when taking OXBRYTA.

Before taking OXBRYTA, tell your healthcare provider about all of your medical conditions, including if you:

  • have liver problems
  • are pregnant or plan to become pregnant. It is not known if OXBRYTA can harm your unborn baby
  • are breastfeeding or plan to breastfeed. It is not known if OXBRYTA can pass into your breastmilk and if it can harm your baby. Do not breastfeed during treatment with OXBRYTA and for at least 2 weeks after the last dose

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines may affect how OXBRYTA works. OXBRYTA may also affect how other medicines work.

What are the possible side effects of OXBRYTA?

OXBRYTA can cause serious side effects, including:

Serious allergic reactions. Tell your healthcare provider or get emergency medical help right away if you get:

  • rash
  • hives
  • shortness of breath
  • swelling of the face

The most common side effects of OXBRYTA include:

  • headache
  • diarrhea
  • stomach (abdominal) pain
  • nausea
  • tiredness
  • rash
  • fever

These are not all the possible side effects of OXBRYTA.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

You may also report side effects to Global Blood Therapeutics at 1-833-428-4968 (1-833-GBT-4YOU).

Keep OXBRYTA and all medicines out of the reach of children.

Source link

Leave a Comment

Your email address will not be published. Required fields are marked *