Access to Medically Necessary Reproductive Care for Individuals with Pulmonary Hypertension

I am a patient with pulmonary hypertension. What follows is a scientific explanation of why access to abortion care and birth control is crucial, and how the Dobbs decision has compounded risk to patients in an already perilous medical situation. Not only is our physical well-being threatened, but our psychological and emotional stability as well. Decisions around our health care are being made for us, and not with our best interest in mind. Behind every statistic and data point is a person already fighting for their lives, and for many, this fight just got so much harder.

– Colleen Brunetti

Pulmonary arterial hypertension (PAH) refers to pulmonary hypertension (PH) attributed to pulmonary vascular remodeling and disproportionately affects females of childbearing age. Despite some success with modern therapy, survival remains poor, with about half of affected individuals dying within 8–10 years of diagnosis (1). As PAH is a disease of young females, access to comprehensive reproductive health care, including contraception and safe and legal abortion services, is essential. Although this document focuses on PAH, where risks of pregnancy and teratogenicity of certain PAH therapies are well known, many of the concerns expressed herein are relevant to other forms of PH.

Teratogenic Medication Used to Treat PAH

PAH therapy includes several drugs with known or suspected teratogenicity: endothelin receptor antagonists, riociguat, and selexipag. All patients on endothelin receptor antagonists or riociguat are federally required to enroll in risk evaluation and management strategy programs, use reliable birth control, and perform monthly pregnancy tests to continue treatment(s). Individualized counseling of patients on birth control options and referral to providers who can implement appropriate contraception is integral to the treatment of PAH.

Risk of Pregnancy in PAH

Pregnancy poses a significant threat to the patient with PAH (mortality rates ranging from 11% to 56%), as well as the fetus (mortality rates as high as 13%) (2, 3). In PAH, the diseased pulmonary vasculature cannot accommodate increased blood volume and flow through vasodilation and recruitment, as occurs normally. Thus, pregnancy can precipitate further pulmonary artery pressure elevation, right ventricular failure, and death (2). In addition, risks such as hypercoagulability; thromboembolism; and peripartum hemodynamic, vagal, and fluid instability may contribute to maternofetal mortality (2). Recognizing these life-threatening risks, major medical groups unanimously agree that patients with PAH who are pregnant should receive care at specialty centers (2, 4–7).

When Pregnancy Occurs

Some patients are not diagnosed with PAH until becoming pregnant. Patients may lack access to reproductive health care, contraception may fail, or pregnancy may be unplanned. Others may choose to become pregnant despite the acknowledged risks. At expert PH centers, providers counsel patients on pregnancy risk to themselves and the fetus and engage in shared decision making regarding next steps. All patients should be offered therapeutic abortion, according to consensus documents (2, 4–7). Given the increased risk of right heart failure and death during surgical procedures, termination of pregnancy should occur at expert PH centers (2, 4–7). For patients who want to continue their pregnancy despite described risks, close monitoring and usually therapeutic escalation at an accredited PH center is essential (6).

Finding Care

When Roe v. Wade was overturned on June 24, 2022, Americans’ constitutional right to abortion ended. Currently, each state sets its own reproductive health policy, including contraception and abortion access. At this writing, 26 states have restrictive abortion policies, 12 states ban abortion completely, 2 states have multiple restrictions and an early gestational age ban, and 12 states have multiple restrictions and a later gestational age ban (8, 9). Despite there being 34 states with Pulmonary Hypertension Association–accredited PH centers, only 9 of those states have protective abortion policies (8, 9).

Because pregnant patients with PAH are highly complex, travel to outside institutions for reproductive care is not feasible or safe. Forty-one states, and many more cities, remain with a mismatch between PH and reproductive care, leaving huge access deserts across the United States (Figure 1) (9, 10). These “care deserts” may cause delays in access to medically recommended therapeutic abortion, risk the life of patients with PAH, and impose psychological and monetary burdens on patients and their families.

Figure 1.

The “care desert” in PAH. Map of Pulmonary Hypertension Association–accredited centers in states with protective abortion policies, Food and Drug Administration–approved therapy for pulmonary arterial hypertension, and major society–endorsed recommendations for reproductive care best practice in pulmonary vascular disease. PAH = pulmonary arterial hypertension; PH = pulmonary hypertension.

Call to Action

As PAH community representatives, we recognize the vital importance of access to comprehensive reproductive health care for our patients. We stand with the American Thoracic Society, American College of Obstetrics and Gynecology, and the Pulmonary Hypertension Association in their support for safe and legal contraception and abortion services as necessary parts of health care.

We are deeply concerned that the overturning of Roe v. Wade will restrict access to necessary medical care for patients with PAH. Restricted access to abortion may force patients with PAH to continue pregnancies and face exposure to significant risk (2). The need to travel outside of one’s city or state to receive necessary health care will be costly and psychologically burdensome and will disproportionally affect those with preexisting barriers to care, such as people of color, minorities, those in rural areas, and the socioeconomically disadvantaged. Furthermore, as pregnancy is a high-risk condition for patients with PAH, leaving the careful monitoring of a specialized center will compound their health risks. When patients with PAH present with right heart failure in pregnancy, immediate access to therapeutic abortion is necessary, as transfer out of state may not be survivable. Forcing pregnant patients to receive PAH care outside of a specialized PH center simply for access to standard reproductive care is unsafe, discriminatory, and unethical.

When lawmakers take away constitutional rights and interfere with reproductive health care through restrictive policies, they undermine the patient-provider relationship and violate the long-established medical ethical principles of beneficence, nonmaleficence, justice, and autonomy. Providers are faced with the ethical dilemma in which providing the best available medical care may result in personal or institutional legal penalties. The medical community must hold lawmakers accountable for respecting patient autonomy and the expert judgment of their care teams.

The decision to proceed with abortion is personal and should be made between a patient and their health care provider. It is important for all individuals to have access to reproductive health care, including contraception and safe and legal abortion services. For our patients with PAH, this is truly a matter of life and death.